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Aspergers Syndrome 100 years Old

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D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)

 

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than social interaction), and curiosity about the environment in childhood

 

these are the two criteria which bother me

 

the first is the one we all talk about and it makes no sense to me (and some, like Tony Attwood feel they can manipulate it) - it is only about the actual articulation of words and sentences, it makes no reference to meaningful communication outside the very basic and nothing about receptive and expressive communication which can be very impaired in AS kids even when they have advanced speech/vocabulary.

When Com is stressed he loses language altogether, and I mean completely, then 10 minutes later he can be apparently fluent again - this is not general delay but it is a serious problem with speech.

my personal feeling is that this is too inaccurate and subjective and too small a difference to be significant as a major defining factor in determining the difference between 2 disabilities.

 

And E covers far too many aspects of life all bunched into one - Com has no cognitive delay and has curiosity but he has significant problems with self-help and adaptive behaviour, hmm!

 

Com's diagnosis was changed to autism 2 weeks ago, so he must meet the criteria for both, either that or the advanced language he had as a toddler is no longer considered diagnositically significant?

 

I know that there are many, many autistic kids far worse off than Com, the severity of the affects of autism on their lives can, for some, only be seen as devastating. They need all the support and understanding they can get to improve the quality of their lives and I would never say that Com's needs are as great or that he should get what those children deserve just because he now has a diagnosis of autism.

But I am pleased that Com now has the recognition of his autism and that people will no longer be blinkered by the 'mild' label when assessing what he needs.

 

I'd definitely prefer autism to autistic psychopathy - (my child is not a psychopath is he? :blink: )

 

I do like Tony Attwoods discovery criteria though, Com fits perfectly and they always make me smile to remember the good things about him when so often we are focused on the problems.

 

Malika, having a disability does not entitle you to DLA automatically, only if it affects your life in certain ways. It very much depends on how different his needs are from most of his peers, for ASD kids a lot of this is age related.

Com gets middle rate because he has significant difficulties with self-help skills mainly and requires full time supervision from an adult who knows how to handle him and manage his needs at 13 - his peers do not. However, at 3 he was probably easier than his peers - no way we would have got DLA for him then!

The younger a child is the more supervision is required anyway so the difference between caring for an ASD kid and an NT kid is not necessarily very big in the early years, it tends to increase with age.

Com also gets lower rate mobility because although he can walk fine and is not difficult to manage out and about he cannot see 3D so he cannot judge speed and distance so he cannot cross a road unsupervised, I don't know a single other 13 year old who can't (even his HFA friend who is outwardly far more severely affected by autism than Com can reliably cross a road) but at 3 it would have probably been a child protection issue if we expected our kids to be crossing roads unsupervised. Anyway it means he can't go out without someone with him so it is an extra need.

 

There are a couple of good DLA threads at the top of help and advice - sometimes rewording things and presenting them in a different way can help them recognise your son's extra needs

 

good luck

 

Zemanski

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I'd definitely prefer autism to autistic psychopathy - (my child is not a psychopath is he?�

 

This is why Lorna Wing chose to call it after Hans Asperger, she thought parents wouldn't be happy to accept psychopathy. She said she now regrets naming it Asperger syndrome as people have seen it as a more acceptable diagnosis. I think professionals often diagnose AS when the person clearly doesn't fit the criteria. Could this be to satisfy the parents or/and the funding criteria?

 

The level of difficulty someone with autism experiences (I am naturally including AS) is often down to the level of support they are or are not getting.

 

Nellie xx

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The level of difficulty someone with autism experiences (I am naturally including AS) is often down to the level of support they are or are not getting.

 

I agree, Nellie, up to a point, adequate support from early on makes a huge differene but I do think that it isn't just the level of support - Com's autism became obvious at around 7 but many kids have clear difficulties at 2 or even earlier, did Com get more support than they did from their parents? - I think not, I think the presentation of autism is more extreme for those children and causing more difficulties requiring earlier intervention and more support.

On the other hand earlier support for Com may have prevented the autism becoming so obvious in the first place and perhaps stopped some of his difficulties developing into the major issues they are for him now.

 

Zemanski

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Did Lorna Wing coin the phrase AS in a paper published in 1981 in a psychology journal?

 

If so, then why did she not publish a summary of her findings in mainstream educational journals such as the TES? If AS was known about in the early 1980s then confining information to obscure psychology journals did nothing except delay the time when AS became known in the medical and education professions.

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I think that often a Consultant will tell a parent that its child has a mild form of autism because they 1) do not want to frighten the parent and mild sounds better and 2) because many parents still see rainman as a typical example of someone with autism.

 

just a thought, but perhaps the reason I am so ready to accept 'autism' is that our consultant didn't do this when Com was first diagnosed, he opened with:

 

'what do you know about autism .....' before going on to talk about AS

 

so I was already very aware that AS was pretty much the same thing.

 

I knew enough about AS and autism at the time not to be frightened by the diagnosis anyway but perhaps it is not good for us for consultants to try to shield us too much from things in this way and they should be giving us good, clear information about what the diagnosis means for our child to dispell the myths instead - too many people are given diagnosis and then left wondering what it means and what to do about it :wallbash:

 

Zemanski

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I agree, Nellie, up to a point, adequate support from early on makes a huge differene but I do think that it isn't just the level of support - Com's autism became obvious at around 7 but many kids have clear difficulties at 2 or even earlier, did Com get more support than they did from their parents? - I think not, I think the presentation of autism is more extreme for those children and causing more difficulties requiring earlier intervention and more support.

On the other hand earlier support for Com may have prevented the autism becoming so obvious in the first place and perhaps stopped some of his difficulties developing into the major issues they are for him now.

 

I think it's becoming clear that early support does make a difference but I'm not sure why autism shows itself at different ages, I imagine there are many reasons. I saw no signs in my youngest son and I was looking for them. He was 22 before I was sure. Even today, at 24 ( he was diagnosed with AS a few months ago) it would be difficult for an outsider to see without a trained eye. On the other hand if he lost the support he has I think it would become very obvious, he would be unable to hold it together, I don't think he could cope. My husband is very high functioning but still needs support in certain circumstances.

 

I'm not sure any of that makes sense...even to me!

 

Nellie xx

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Hi to all :)

 

I think the main problem is that we could gather 100 children with a DX of AS or high functioning autism and find there are huge difference between them which are not age related to bear in mind as well that problems change all the time some get worst some better and it is not really predictable :wacko:

I am surprised now to see my son getting so independant in self care and this happened during the last 2 months, of course I trained him but I did it for years with little result and now he just seems ready for it ( that will certainly put me out for DLA) ;) he is improving as well in his level of expression but now he has very long time out of reality with lot of tics and word repetition... this was always there but just seem to get worst :(

3 years ago he had some very challenging behaviour :wallbash: this is much better now but I know I cannot ever be sure it won't come back and when!!??

 

May be what we need is some accurate description of autism with various option for each stage and possibility to have reassesment of the condition every year to try to understand the changing aspect of the condition of course this would cost. :devil:

 

Malika.

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Hi Zemanski,

 

as for me it was a relieved to have the DX as I had to fight for it for more than 2 years telling everybody that something was not quite right and feeling that people thought I was a nutter and that's why my son had pbs :( (ok they are right sometimes but not all the time :lol::lol: )

 

Malika.

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Hi Nellie,

 

I think that ASD is very unique to the individual. There are predominant characteristics in the individuals that become apparent at different times in their life. I know in our group, the kids share some broad characteristics, but they have totally different needs because they are individuals in their own right.

 

Touch wood and Thank God and everything, but at the moment, I find it hard to see the difference between my son and his classmates - there are differences and they have not gone away but the extremes of his behavioural reactions are just not there because he is settled and happy. I know that this is a precarious balance and this is a situation that could chnage at any time.

 

Perhaps the outward signals of an ASD are only apparent when the environment and people do not match the childs needs.

 

Best wishes

 

HelenL

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support is definitely such a big issue and this is partly why the 'mild' label is so damaging, it implies they don't need it.

 

I was reading a study of brain functioning in autism on the awares site - apparently autistic brains have some very significant differences in construction and functioning which explain all sorts of things such as the propensity for sensory overload and the tendency towards monoprocessing (only being able to focus on one area of attention at a time) and it looks like this can happen to varying degrees in different areas of functioning in very similar brains.

 

Apparently this difference in structure is established by the 4th month of pregnancy!

 

cognition levels have been shown to have a degree of influence on how the person can develop effective coping strategies which can mask the autism and its effects which may partly explain why it is less obvious in some people in the early years.

 

Here's Com's diagnostic history:

 

18months - noted in medical records as very intelligent due to advanced use of language.

 

3 years - autism suggested by grandad, we laughed it off, he made eye contact and interacted (only with adults though)

 

7years - dyspraxia and dyslexia (he is definitely not dyslexic)

 

9 years - AS

 

13 years - autism

 

I would say that a year ago Com would not have been diagnosed with autism, it is much more obvious now.

 

I would also say that if his support had been maintained in school last year he would not have been diagnosed with autism 2 weeks ago (he had a great year his first year in high school and his autism was actually becoming less obvious but that very progress led to the senco feeling he didn't need the support and it all went pear-shaped resulting in observable and measurable regression - which I'm assured is only temporary :pray: )

 

support is very, very important!

 

Zemanski

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Hi zemanski :)

 

I have read that one about brain functionment too and found it very interesting B) . I think what support do is to allow connection to be restore or created this is valid as well (as you mention) for OT, just one thing I wanted to mention is that I have notice that my son get worst when he has to deal which too much input in a day :tearful: as well strangely he seems to improve when he eats lot of fresh fruit at least 4/5 every day...may be just a coincidence but you could give it a try.

 

Malika.

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great advice but Com is one of the few ASD kids who has an excellent diet from what I read - eats tomatoes in preference to sweets, give him a mango to himself and he is in very messy heaven!

 

he takes high potency fish oils but otherwise I don't tend to bother these days, nothing else seems to make a discernable difference.

 

his support has been increased at least 3-fold from the levels in Y7 and it is now ASD specific, the difference is incredible, so I'm really hoping he's going to recover.

 

ironically removing just a little support to save money has ended up costing the school far more in the long run because now they have to fund specialist extras!

 

Zemanski

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Hi Zemanski,

 

I am lucky on this as well as my son just love eating fruits and rather like to chose a plum instead of a chocolate bar. B)

 

Well this is the problem with the short sighted policy of most LEA today not to give a little more money now and ending up having to collect the pieces tomorrow at much greater expense :wallbash: but it seems that it is all right for them as only few people will pursue it, but then you find older ASD people completly unable to cope with their life.

Hopefully your son will recover I think receiving support for most ASD children signifie less stress and probably better brain functionning as it seems to be true for many NT people.

 

Malika.

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Well this is the problem with the short sighted policy of most LEA today not to give a little more money now and ending up having to collect the pieces tomorrow at much greater expense

 

The problem is that most LEAs only have the 'problem' for around 11 yrs or so - after that it tends to be someone else's problem, they (LEAs) don't have to pick up the pieces. So they drag thier feet over funding (you can't back date support like you can DLA). So the funding they do have to give is for a short a time span as possible. Then hand it to...

 

Or am I being cynical?

Edited by phasmid

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  think that often a Consultant will tell a parent that its child has a mild form of autism because they 1) do not want to frighten the parent and mild sounds better and 2) because many parents still see rainman as a typical example of someone with autism.

 

Agree. The number of people who have shown abject surprise at the DS's likely diagnosis because he doesn't resemble Rainman!

 

I think too the medical use of term 'mild' may have a different meaning to the lay person's understanding of 'mild'. Medically 'mild' is sometimes used to describe a different level of severity which may change throughout the person's life rather than meaning 'insignificant' though I'm sure it is used in that context sometimes

 

With DS I sometimes see him getting more 'autistic' as he gets older maybe because the differences between him and his peers is more obvious? In other ways it is less so. DH though largely 'outgrew' his AS-ness. I don't know whether he would ever fulfill the relevant tockboxes for AS but certainly had a lot of traits, He describes having a Damascus moment when he was twelve when the world suddenly made sense to him and he thrived. Prior to that he was a miserable anxious socially isolated child with few friends and need for specific rituals and routines. He still has his quirks :) and his AS traits are more prominent when he's tired, stressed or unwell. I don't know why things changed when he reached his teens, guess there could be lots of reasons really. Paed who DS sees says this sometimes happens with the littl'uns that they can mature out of it to some degree or other, though never completely, but it is variable and in his experience difficult to predict

 

Liz

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Going back a bit further up the thread to issues raised re AS or ASD personally want DS to have a diagnosis of ASD rather than AS whenever a diagnosis materialises. Mainly because I find the varying definitions of AS confusing and am not completely sure I understand properly what is it whereas I do for ASD! The issues with language development are particularly confusing having read varying criteria. Seems even the experts can't agree? What is fluent speech? DS's speech is fluent according to one definition I've read but he still has a speech delay and also the disordered speech development typical of autism

 

Came across different criteria from The Institute Of Child Health who have developed a computer programme questionaire to help aid diagnosis. According to that DS neither has AS as he had speech delay but neither has autism as his speech delay wasn't sever enough to fulfil the criteria. He fell in the group of 'atypical autism' whatever that may be. Confusing to say the least!

 

In many ways can see why Aspergers is a redundant term if it is perceived as being something different to autism or always a mild variant rather than a type of autism of varind severities. However lumping all children under the ASD umbrella seems to deny the huge range of ways ASD is expressed risking a one-size-fits-all approach. Maybe the division onto high functioning and low functioning is better though what does high functioning mean? It seems an arbitrary decision, is is based upon normal IQ, normal speech development or less severe expression of symptoms or what?

 

Liz

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Hi Liz :)

 

You are right that most of expert cannot agree on the criteria for autism. :unsure:

 

going back to history of DX you had a description of "classical Autism " made by Kanner call as well "Kanner syndrome" describing people affected who could not talk and communicate rocking constantly and banging their head and then you have the description of Hans Asperger describing people with social impairment but fluent speech this is why now children who have speech delay ( like my son) do not fit the criteria for Asperger but are included in the large umbrella of ASD however because they as well do not fit the criteria for "classical autism" so they are often refer to as "atypical". :wacko:

 

However once children with ASD (high functioning meaning with normal or high IQ) have develope speech they do not seem to be any different from their AS conterpart but are classified differently because of the first definition of Hans Asperger ( refering to children with normal speech development) but imagine that a child like mine would not have me to remember his speech delay he then probably would be classify has a child with Asperger. ;)

 

Sorry I hope that's makes some sense as he took me so long to try to understand the why of the different classifications. still not sure I got it right. :oops:

 

After all the label should not matter what should matter is the specilist report describing the child difficulties and from there his needs should be assessed and provided for >:D<<'> that is where the system does not function as most of educational staff hide behind the so call intellectual ability of our children to avoid giving the appropriate support, it is a bit like saying to somebody in the wheelchair "never mind if you get tired or you have body pain because of long hours in your wheel chair at school and that you cannot make friend on the playground, you are bright so you can make it". :(

 

The fact is that most professionals have not yet fully understood the difficulties of such children because it is very hard to evaluate how social impairment as well as pragmatic language difficulties and sensory integration pbs can affect their every day life in a NT environment. :ph34r:

 

Take care.

 

Malika.

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Thanks Malika :) That does make a lot of sense! Wonder what the definition of 'normal speech' is? DS is now classed as fluent but his speech isn't normal for a 4yr old? His vocab is getting closer to age appropriate but other aspects of his language development (like positional sense, processing of commands, social aspects of speech) are still delayed and I wonder if he'll always have some sort of difficulties in these areas? I'm sure I've read that children (or adults) with AS do have differences in speech and language even if theyare more subtle. Speech isn't just about words after all.

 

Agree completely about labels not mattering (in an ideal world!), suppose it is semantics really, We're currently fortunate that despite no diagnosis we are getting help based upon DSs needs hence why we've not really pushed for one. However I am concerned that once he enters full-time education that situation might change. Paed still thinks he should get help based on a problem list rather than diagnosis but suspect the LEA might view it differently :blink:

 

Lx

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Mitzi Waltz wrote a paper about autism in 19th Century which you all may find interesting.

 

http://aut.sagepub.com/cgi/reprint/8/1/7

 

Here she's writing on the metaphors used in autism, starting with Bettelheim (he of refridgerator mother fame) which is also thought-provoking:

 

http://www.inter-disciplinary.net/mso/hid/...ltz%20paper.pdf

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:unsure: Have read all this thread with very great interest.........

 

My little fella was first dx with SPLD, although I argued this for 6 months till Child Psych did AS checklist, the dx'd Aspergers...... This opened many doors for us regarding statements, school support, DLA etc etc.....

 

I have asked Child Psych on numerous occasions what the differences are between HFA/ASD & AS, only to get fobbed of. Have read up on all these things, and not convinced my lad has AS.

 

A friend of mine with a son dx autism told me the main difference between the two was a child with autism isnt interested in socialising, whereas a child with AS wants to but does so clumsily and inappropriately. Have also read the 'language delay' theories as well.

 

Problem I have now, is do I just accept dx as it stands, or get raised eyebrows again if i question this. Took 3 years to get anyone to listen to me (munchausen by proxy muttered about throughout this time by professionals) My lad is bright, but has trouble with pragmatic speech. Unable to explain himself and answer questions appropriately and consistently,cognitively he has trouble understanding questions and often ignores you or gives an answer so off the wall, you know he hasnt understood at all. he is very black and white in his thought processes, taking speech literally, has great struggles socially, although wants to join in, but is seen as 'odd'. will blank kids one minute, but ignore them the next. Life is on his terms or not at all..............

 

So, reading through that again, where exactly does he fit in? School doctor told us to think of him on the 'autistic side of Aspergers', which confused us about dx even more!!!

 

Does a dx of either AS or Autism matter so much at 6 years old? Do I risk the 'professionals' giving me the 'stares' again? Or do I just get on with it and 'see how it goes'.........

 

Grey area innit? :wacko:

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Hi yorkie. :)

 

from your description your son is very much like mine who was Dx with atypical autism but could be asperger if he had no language delay my son has Autism and he is very interested in socialising but does not know how. :oops:

Many children with autism who are not verbal or semi-verbal single word or two words may be interested in socialising but unable to express it, they often have more sensory problems which make it even harder to make contact with people.

 

Well I was thinking about label and from what I have read Asperger is part of the autistic spectrum the big umbrella Autistc spectrum disorder cover in fact classical autism (kanner syndrome) atypical autism (semi verbal or verbal children but with speech development pbs) and asperger syndrome (normal speech development but social impairement and pragmatic language difficulties)

To bear in mind that all children with autism have social impairment (call triad of impairment) more difficult to overcome if they are non verbal or have mental retardation which may be very difficult to evaluate in a child who is not verbal anyway. :tearful:

Now a child like mine could be classified as atypical autistic or atypical asperger.

too verbal to be typical autistic and delay in language not making him AS. :unsure:

 

What you desribe seems to fit the AS DX but you did not mention if yours had language developmental delay.

Do you know the book from Tony Atwood "Asperger syndrome A guide for parents and professionals" if you have not read it yet try to do so I found it very clarifying. B)

 

By the way what is SPLD.

 

Hope this helpe take care. ;)

 

Malika.

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Hi Yorkie,

 

I would say, choose the label that will get you the most help and support in your situation. You say that the diagnosis has already opened doors, which is encouraging - as long as the professionals are looking at what your son actually needs, the actual label doesn't matter at this stage. I think the problems occur when the people using either of these terms have particular stereotypes in mind and therefore don't see the individual - no two people on the spectrum behave the same way.

 

Your son as he grows older may have a view on this - as I've said my daughter (16) has very clear views about calling herself autistic, although she was diagnosed with AS. Her behaviour in the past couple of years has spanned all the possibilities at different times: from high to low functioning to somewhere in the middle. So I agree, it's a very grey area.

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Hi Jadded :)

 

Just got the chance to read your links and feeling so upset :( right now at the memory of what as trainee for educational staff 25 years ago in Paris I had been fed with, all the Freud and Bettleheim theory (shall I say mythology) the battle between acquired and innate behaviour raging at the time with nobody to be able to push something new. :wallbash:

and the bad parenting theory emerging it's ugly head when ever a child was experiencing social or mental problems. :devil:

What I had to listen to at the time about autism was the idea of non-human children unable to get out of their shell because of bad parenting or abuse from which they had to protect themselves. :devil: They were considered empty and unable to feel any sort of human emotion so even denied to be human altogether.

This is why there are still professional dragging the idea that children with autism are not willing to socialised, :ph34r: so why would they get so frustrated then?

 

This remind me of the Helen Keller story who after normal development was severely ill and became blind deaf and dumb unable to communicate she became so frustrated that she had terrible temper tantrum :angry: ( she was around 5) until her tutor manage to teach her how to communicate through taping her finger on her hand finally able to communicate again she became not only one of the most educated disabled but a leading voice for blind deaf and dumb people. :thumbs: Although of normal intelligence before her illness she was thought to have lost most of her abilities because she could not communicate with the outside world. :hypno:

 

It is such an important brake through that science can now put some light on the biologic origin of many neurological problems which were once attributed to social circumstances only.

 

Imaging having the difficulty of raising a child with classical Autism and being told that it is your fault because you are such a bad parent or you may have abused your child... :oops::tearful:

 

At least now we are some steps forward. Which is encouraging, in fact labels are not the most important as far as help and understanding are on the agenda.

 

Thanks for the links was like travelling in the past. ;):(

 

Malika.

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first off, Malika, SPLD is speech and language disorder, so Yorkie's boy fits the criteria for autism which I presume is why there is some confusion about the diagnosis but as I said earlier professionals, including Tony Attwood, don't always feel this is significant and do still diagnose AS - this is subjective and can be done for all sorts of reasons, Tony Attwood says that if the language skills have caught up then AS is an appropriate diagnosis. Some people even get the autism diagnosis first and are later rediagnosed AS on that basis and for me that implies strongly that there really is no difference - you cannot be autistic and 'progress' into another disability if those disabilities are really different; can a downs child change their diagnosis on the basis of progress in one area of functioning? Functioning may improve or start at a higher level for some kids but it is still downs and that cannot change. I think that the only real function of the label AS is to define the type of presentation the autism takes, I increasingly feel it should not be used as the primary diagnostic label, only as a secondary descriptive label which is why I like the aspergers autism label.

Com has been rediagnosed from AS to autistic - this could not happen unless he was always autistic, nor could it happen if he did not fit the criteria for AS in the first place. it can only mean they are the same disability but that his presentation has changed.

 

I had much the same reaction to those papers, was it guilt that in the past I didn't see through some of those attitudes and theories? - though how I could be expected to when there were no counterviews and I had no knowledge or experience of autism, I don't know.

I don't think I actually held those views but I certainly didn't question them.

It is very hard to see now how people, professionals no less, could have held such ideas and felt justified in promoting them but while we moan about the culture and society we live in most of the time (which is good because people wouldn't want to change it if they weren't dissatisfied) I think looking back at how people used to think only a very short time ago should really be giving us a boost of confidence in the propensity of our society to evolve and our place in that evolution.

The children who grew up with autism then had no chance, they were considered 'subhuman' treated with aversion therapies, subjected to routine abuse and left to fester in neglect. But for most children on the spectrum these days things are so much better, they are loved and respected, they are nurtured and cared for, they are acknowledged by those that know them to be capable, wonderful, feeling people and they have rights and advocacy. We are still in the midst of this change and we have a long way to go before autistic people gain their true and deserved place in our society but looking back at things like this makes me feel good about what I am doing, it lifts the depression of the seemingly endless battles just a little bit and helps me feel we might be getting somewhere.

 

glad I don't think like that, glad none of us here do, but should you meet such a mythical beast on the streets I'd recommend calling in the batcave superheros - this is definitely a case for judge thredd and his angels, anyone so ignorant deserves thorough re-education :devil:

 

Zemanski

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Hi Malika

 

I think it's really important to understand that many, many professionals will have been trained under the 'bad parenting' model of 25 years ago. If autism/SEN/learning disability is not their field of expertise they may have no up-to-date training. Someone in a senior, decision-making role, for instance. In education in particular the 'blame to parents' model still thrives.

 

I think we need to be pushing the neuro-biological aspect strongly to the fore.

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It is very hard to see now how people, professionals no less, could have held such ideas and felt justified in promoting them but while we moan about the culture and society we live in most of the time (which is good because people wouldn't want to change it if they weren't dissatisfied) I think looking back at how people used to think only a very short time ago should really be giving us a boost of confidence in the propensity of our society to evolve and our place in that evolution.

The children who grew up with autism then had no chance, they were considered 'subhuman' treated with aversion therapies, subjected to routine abuse and left to fester in neglect. But for most children on the spectrum these days things are so much better, they are loved and respected, they are nurtured and cared for, they are acknowledged by those that know them to be capable, wonderful, feeling people and they have rights and advocacy.

 

There were no facilities for kids with AS or ASD during the 1980s and early 90s. AS was not known about and a kid with AS was simply accused of being badly behaved and having poor social skills. Professionals in education, psychology, and medicine often took the attitude of blaming the parents for bad upbringing and regularly prescribed a dose of hard discipline as a solution to the problem - which rarely if ever worked. I wonder how many kids with AS or ASD were condemned to special needs residential schools that did not cater for their needs and were run more along the lines of boot camps or detention centres rather than schools? My estimate is at least 2000 from 1970 to 1995. In many cases their lives were permanently screwed up by the hash and brutal regimes imposed on them and the rampant bullying and victimisation that took place in these institutions. A high proportion probably left with no qualifications because the primary role of the schools was to improve ones social skills in a disciplined environment rather than provide a high quality education. Many kids with AS or ASD were also threatened with being sent to psychiatric hospitals either by their parents or professionals unless their behaviour and co-operation with others improved.

 

We are still in the midst of this change and we have a long way to go before autistic people gain their true and deserved place in our society but looking back at things like this makes me feel good about what I am doing, it lifts the depression of the seemingly endless battles just a little bit and helps me feel we might be getting somewhere.

 

We have certainly come a long way since the 1980s and advancement in knowledge of ASD and provision of resources within the mainstream education system has come faster than I expected it to. If anyone here is ripping their hair out over problems then I can assure you that you would not have wanted to a be a kid with AS or ASD during the 1980s or their parent for that matter. You would probably have felt trapped and isolated as the likelihood of knowing anyone whose kid suffers from similar problems would be minimal, and probably think your kid was a unique and isolated case. I wanted to meet up with kids who suffered from similar problems in the attempt to try and find out if there was some psychological condition yet to be discovered, but my LEA would not reveal information about other statemented kids because of confidentiality restrictions and the Official Secrets Act. I asked my LEA to write letters to parents of kids with similar problems on their statements in order to arrange a meeting but the LEA refused. The internet didn't exist back then so it was virtually impossible to obtain information from anywhere other than the education system or what few psychology books were stocked in your library - none of which described AS or anything that came close. A discussion forum like this could only have been dreamed of back in the 1980s so you should think yourself lucky that technology has moved on since my days at school.

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Canopus, whatever problems we have with schools and services I am so grateful I didn't have my kids 10 years earlier when most of my friends did because I know things could only have been worse for Com.

 

Your experiences remind us just how bad things could be, I'm really glad you feel able to share them with us. B)

 

Zemanski

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Rephrase that into how bad things really were in the 1980s and society accepted it as the norm back then. I have encountered several people who say that I deserved everything I got for my bad behaviour at school and I should have been locked away in a harsher institution at an earlier age. Having the audicity to blame some obscure medical condition for my behavioural problems is just another case of thinking I almost have a right to get away with murder.

 

You get all these crummy websites like Friends Reunited and whatever for bored fed up adults to reminisce over their childhoods in the 1950s/60s/70s/80s/90s. I will assure you that regardless of what you think of the education system of today and the problems you encounter with the school and LEA; your kid would have had a worse time at school during any of these bygone decades. Things are much better for them today.

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I have no illusions, I was teaching in the 80's - sorry I used the wrong word but I was still thinking of Com rather than you in that sentence, not very clear.

 

well this decade could be better still and if we keep up the fight the next one will be another step forward - how many steps it will take I don't know though.

 

Zemanski

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The message about AS still hasn't got through to the best part of the independent and higher education sectors, but at least people with AS can avoid these more easily than the state school system. I doubt that many teachers/lecturers in the independent and higher education sectors take much interest in AS and ASD. They tend to be qualified in their own subject rather than education and probably have little desire or incentive to bend over backwards to accomodate the needs of a handful of people with some weird hidden disability. Their attitude is likely to be "if your'e not up to standards then bog off elsewhere" although they probably won't say it in public because it could lead to repercussions from disability organisations. There is a lot of inertia in the independent and higher education sectors that often results from tradition and hatred of change. It will probably take more than 10 years for the higher education sector to be as clued up as state schools are today when it comes to AS and ASD.

 

My experience is that universities are quite harsh and unforgiving places even at the best of times and although the registry holds details on disabilities, nothing ever seems to trickle down to individual lecturers and lecture halls and labs. Quite often a lecturer will only teach a student for one semester then will have nothing to do with them so they often can't be bothered spending time providing for their special needs.

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Hi Jaded, Zemanski, Canopus and all :)

 

Jaded yes now we are lucky enough to have access to neuro-biological information and understanding and this should be reminded when ever possible, the people who have been trained like 25 years ago will get less and less, beside now with all the information we have available they do not have any excuse not to update their knowledge. :wallbash:

 

Thanks Zemanski ;) this why I was not sure about Yorkie boy but if he had been DX with Speech and Language disorder he is definitely like my son and strictly speaking will fit the ASD criteria and not the AS criteria.

As for the past I remember questioning the Freudian theory because I always found it like a mythology book and so far from the reality we had to work with every day ( however any doubtful word on the subject would make the psychologist and psychiatrist teaching us raising their eyebrow and dismissing any sort of dissidence from what was at the time considered the psychological bible) as for any understanding of Autism as a spectrum we had none even the description of Hans Asperger had not reached us. :ph34r:

 

Yes Canopus our children today are much more recognised than before B) however as far as I remember most of educational staff (I was working in an institution caring for children with social problem who had been taken away from their home by SS or were there at the request of their parents who feel they could not cope) were not treating them harshly and were so dedicated to their job (except for a few) but what was missing was the understanding and what help we could give them :unsure: remembering a boy who certainly was very similar to mine and certainly high functioning autistic the best we manage to do was to battle for funding (not an easy task at the time either) for him to get 2 years psychotherapy on the ground of schizophrenic tendency :oops: , horrendous :tearful: may be, but a little chance for him to be properly DX by a professional even if very unlikely at the time.

 

In any case there is still a lot to do in fact the main problem is with the teaching body (I found them in general less open minded that other educational staff) because somehow they are not interested as such, I have few friends who are teacher mainly in secondary but even if they listen to me it is always like if they do not feel concerned :hypno: by the subject as if they have some other intellectual pursuit much worthy of their time and effort.

 

May be it is the aim of teaching which is perceived wrongly as an intellectual game and not as a way to build up a better society >:D<<'> this is why sometimes I think it is better for young people to go to college instead of university but then their access to certain jobs may be hindered.

 

Malika. :)

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hi everyone,

 

I've just read through this thread and found everone's take on the 80s interesting. In the late 70s early eighties, I was a student with an interest in autism - I was doing a social care type course. I looked at whatever reading matter that I could find. I read a book called Children with Emerald Eyes - can't remember the author and Dibs in search of self (Virginia Axwell I think). Both mentioned autism. The former describe several success stories using psychoanalism to 'save' children from their locked up little worlds. I think others have mentioned Dibs on this forum - I'm sure it was suggested that he was Autistic - but it seems that he was 'saved' through reliving earlier traumas. These romantic tales of making breakthroughs were very inspiring (to an 18 year old) but I was always a little confused when I went to placements and met true autistic children. In fact it made me wonder if the American definition of Autism was the same as the British. I think the 80s was an era when autism was not accepted as a developmental disorder with biological roots - I suppose the research was still in early stages then. Certainly, in literature that I read and films that I saw, autism was always something that could be conqured.

 

Don't worry, I threw my magic wand away years ago. The children I worked with were having none of it, they didn't want to be saved and my fairy wings kept getting torn :rolleyes: Luckily, there is a lot more information out there nowadays and also more in the way of courses to teach care staff and support workers about ASDs

 

I also read the Bettlehiem stuff and just accepted it as true :o . Please forgive me, I was young.

 

I also remember the eighties as a time when holding therapy was used and the insistance of eye contact. I must say I was never keen on either of these and didn't carry it out but witnessed others doing it. Thank God that's not the norm in our schools anymore.

 

SV

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I suppose the research was still in early stages then. Certainly, in literature that I read and films that I saw, autism was always something that could be conqured.

Well something vague this what was the pb of the time every type of behaviour were suppose to be acquired and not innate (biological) because of all the work done at the time which was push a lot especialy in the state because so many professional have made millions with people going to psychotherapy for years. :hypno:

Beside as there were no explanation about that type of behaviour it had to be found in a complexe psychological adventure can a professional ever be able to say "I don't know" they can now but not at the time they had to have an answer for everything to justifie how much money they earned. ;)

In consequences a behaviour which was refer to as acquired could always be modified with apropriate training this is why I am so wary of ABA and all behaviourist training. :devil:

By the way do not feel guilty not only you were young but nothing else was available at the time. :oops:

 

Malika.

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We've still got miles to go:

 

Persistence of a stereotype

A definition of autism reflecting the outmoded 'refrigerator mother' theory appears in a prestigious reference work, the 2001 edition of Rizzoli-Larousse Encyclopedia:

 

"Autism is the fundamental nature of the schizoid constitution which can merge into clear schizophrenia ... The autistic child, if he receives the appropriate treatment and this is followed up by his relatives (who are often the cause of the syndrome, especially when they overstep the mark and insist on an over-perfectionistic upbringing) can be more or less completely cured. Nevertheless, even when the problem is resolved, he will still have difficulties in forging normal connections and calm inter-personal relationships."

 

Feel like Nelson Mandela. One of his quotes is something like 'after you've climbed a great hill, you find there are many more hills to climb'.

 

I was having a browse on Bettelheim, only to find it was Kanner who's responsible for the refrigerator mother thing. Apparently he described mothers of autistic children as "just happening to defrost enough to produce a child" in an interview in Time magazine.

 

http://en.wikipedia.org/wiki/Refrigerator_mother

 

Anyway. Shall stop looking. It's not good for my blood pressure.

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if it was Kanner then it's no wonder the view of autism was so screwed up - he was the expert, the main source of knowledge on the subject.

 

And we always believe the experts, now, don't we?

 

thank goodness, as Canopus said earlier, we now have the technology which gives us (and especially autistic people themselves) the ability to research for ourselves and to communicate our ideas and understanding - these days we are even able to discuss things with experts on sites like awares, at least there's the possibilty that some will listen when we challenge their assumptions.

 

time to leave the 80s behind and think about how to move things on, I think

 

how do we promote the interests of AS people on Asperger's birthday?

 

how do we stand against the tide of change in the education system that threatens to exclude our children completely?

 

A book of dreams for the future might be good - individuals' ideas of what they would like to see in our schools and society that would support us and the people we care for.

 

I have a book called 'two dogs and freedom' written by south african children in their struggle for their dreams. It is simply a collation of school children's writings, in their own hands with their pictures alongside just as they presented them to their teachers. I used to use it in school as part of black history, just the title sends shivers down my spine - what a dream!

 

something of this sort could show the diversity of need and increase awareness and perhaps at the same time offer solutions to some of the problems autistic people face in their daily lives.

 

Zemanski

Edited by Zemanski

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My educational psychologist certainly blamed my parents for allowing me to spend too many hours at home in front of a computer or doing some other solitary activity. She repeatedly told them that I should get out more and mix with people my own age in team activities. My reply was that I regularly went out to visit places of interest such as museums or go for walks in the park or by the beach, but this didn't impress her because I would go with my family or one or two friends. I couldn't see what was wrong with this.

 

I knew nothing about Kanner at the time but the refrigerator mother theory was probably going strong even as late as 1989. It would be difficult to deny from my statement, that the solution to my problems was to force me to mix with other kids in a disciplined environment where team activities prevailed.

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I also remember the eighties as a time when holding therapy was used and the insistance of eye contact.

 

After watching these images on televison I don't think I will ever get them out of my head. Sadly we still have the insistance of eye contact. :shame:

 

My son was born in '78, I believe he suffered long term damage by the system. Although things have improved, some children are still being damaged.

 

Nellie xx

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