Aspergers Syndrome 100 years Old

[oracle]

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Edited November 3, 2006 by oracle

[call me jaded]

Since when was AS not autism?

 

I applaud your enthusiasm, Carole. I will go and read the discussion.

[oracle]

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Edited November 3, 2006 by oracle

[LizK]

Adam's paediatrican if and when he reaches a diagnosis on Adam has said he will use the terminolgy ASD rather than AS for the reasons you've given now and previously. Although ADam may be on the 'milder' end of the spectrum it doesn't mean his needs are any the less, just different. The local CAMHS psychiatrist with an interest in this area also uses ASD now though some parents apparently prefer the label of 'Apsergers' rather than 'autism' as it doesn't sound so 'severe'

 

But going back to the original thread yes that would be a fine idea

 

Liz x

[Zemanski]

Com just got rediagnosed by the EP - autistic!

 

this is to secure access to support from the autism unit in his school - opening in Jan

 

and also to convince the LEA of the need to tighten up his statement next month

 

shouldn't have to do this but I'm dead pleased

 

don't know how he feels yet though - may not tell him, he knows we use both terms interchangeably and he is happy to be AS (well, as happy as any teenager might be)

 

Nemo's good at web stuff if that's any use, he's a bit shy on the self promotion front so I thought I'd just mention it

 

zemanski

[Guest flutter]

this all confuses me,

the terminology, but DD has been diagnosed with asd? not aspergers

she wants term asd

so will watch this with intersest

but if u want any help to do stuff shout

C x

[Kathryn]

As I've said before, my daughter refuses to have anything to do with the term "asperger" and prefers autism or ASD. She once suggested "asperger's autism " as a good description of the condition: I think there may be something in that.

[oracle]

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Edited November 3, 2006 by oracle

[Zemanski]

trouble is that's AA - could be very confusing, would it make us eligible for calling home start on a bad school morning?

 

I like it too

 

Z

Edited October 22, 2005 by Zemanski

[nellie]

Aspergers Autism is great, but how would it change things? Everyone would still say the person has Asperger syndrome, therefore they don't meet the criteria.

 

If the services see a diagnosis ASD (sorry, I know you don't approve Lucas) they assess the persons needs, at least they should assess! A person with a diagnosis of Asperger syndrome is often thought to be able, if they have severe problems they are seen as mental health problems. Mental health often don't have the understanding of autism.

 

The criteria for funding is often described as severe and complex. What is severe? How do you quantify it, it's the same as trying to quantify nice.

 

I agree that we should be redefining what Aspergers Syndrome is and what it means to the person who has it? I would also like them to redefine learning difficulties, infact they can rename that one!!!

 

Nellie - autism'd out!

[littlenemo]

spot on, Nellie

 

in NZ they use the term global learning difficulties and it covers all aspects of learning including social and communication rather than just academic

 

so AS people fit!

 

Z

[Viper]

I agree with the idea but can we do something else as well. I have thought for a long time that we could bring out a book!! My idea is that those on the forum who are able to, could write a poem about life with AS/AS kids or any little quotes we want to put in (all our own) and somehow get it published, then all the proceeds go to the NAS or other. That way we can highlight AS, this forum and at the same time raise money.

 

Might not be feasable but had to try.

 

Viper.

[oracle]

Viper I think that your idea is excellent about writing a book. I would also like to see NAS help us to make sure that AS is understood and that it can infact be very disabling. At the moment I do not think that they do. I am quite unhappy with their information about AS. It is not until you reach the final paragraph that I feel they begin to sum up how difficult it can be for someone with AS. But that is just my opinion.

 

I also agree that while I personally feel Aspergers Autsim is a brilliant way to phrase it it would probably gain us nothing nationally. ASD is far the best way to go. BUT can we achieve this. The Government have themselves created a sub group of autism by taking AS out of their White Paper for Learning Disabilities. As far as I am aware NAS have not tried to stop this from happening? But if not Learning Disabled what then - because we are all aware that AS can be very disabling for a person. If there is going to be a new sub-header introduced I have not heard about it.

 

Carole

[nellie]

Viper,

 

You obviously haven't seen my poems. I think it's sad to say that the majority of the public don't care, they are too busy looking after number one.

 

I believe it's more important to influence the government and the agencies who provide the services. Services for children are dire but services for adults are even worse and no sign of them getting any better. They brought out the National Autism Plan for Children and they are bringing out a plan for adults, that's great, but they are not mandatory!

 

We need to be able to meet a persons needs, not just a label.

 

Nellie - still autism'd out!

[Kathryn]

trouble is that's AA - could be very confusing, would it make us eligible for calling home start on a bad school morning?

 

I like it too

 

Z

Or it could suggest that one has been hitting the booze a little too much.

 

"Aspergers autism" would at least be a way of linking the two conditions together. far too many people say what's that? when one mentions the term Aspergers. How does one get the meaning into public consciousness? Downs syndrome and even Munchhausen's are household words.

 

I agree with you Nellie that labels on their own are pointless without the provision for a person's needs.

 

And I agree with you Carole about the NAS - although I find their information and the education advocacy service very helpful I don't think they really speak for those who are at the higher functioning end of the spectrum. Having just joined, I got their magazine and found very little in it which related to our situation. Perhaps ASD is too wide an area for one organisation to tackle and there should be a separate organisaion representing those with AS/HFA?

[Malika]

Hi

 

I have read somewhere in the conference board (sorry cannot remember where ) that there is no such thing as mild autism or high functionning autism, there are people with autism who have as well retardation ( mild, moderate or severe ) and there are people with autism who have no signe of retardation and may be able to cope better because they can compensate their social impairment with their intellectual capability however all people with autism will have social impairement and some form of learning difficulties due to their condition as well as sensory integration difficulties, and people with autism are not more or less autistic they are just more or less able to compensate for it.

I must say that I really agree with this ( sorry that I cannot remember the name of the clever one who wrote this)

 

This the problem I have with the school as I keep saying that as far as I can understand my son his very impaired with his autism which I see at something separate from his intellectual capability the fact that he is quite bright just help him hide his handicap (social, language ...)

It is I think the main problem we all have with the school setting as most professionnal cannot dissosciate the intellectual ability to the social impairment and sensory problems.

 

What do you all think???

 

Malika.

[Viper]

The main idea of the book was to gain national coverage via news etc. Think about it, a forum with it's own book would bring lots of interest. We could call it Aspergers Autism. We could also have a forword writen about how Aspergers affects people.

 

Viper.

[Zemanski]

Nemo says we could pull lots of stuff out of our posts and call it

 

'helpful hints for happy aspies'

 

 

that theory sounds familiar, Malika - the 'AS is a mild form of autism' is one of my favourite hobby horses

 

I think it's one of the topics we were discussing in research?

 

 

Zemanski

[Kathryn]

A book - what a great idea. Given the number of parents and children on this forum who are taking antidepressants maybe we could get a major drug company to sponsor it.

[Malika]

Hi zemanski and all.

 

I am not too sure if AS is a "mild form of autism" strangly enough my son who has a ASD DX because he had language delays (mainly in learning to form articulate sentences not in learning single words) seems to be less "autistic" than some children I know with a DX of AS I mean by this that he seems to progress quite well in few area and may be is main problem remain social situation misunderstanding and pragmatic language as well as sensory pbs but he is very caring and affectionate as well (however I am still waiting for fragile X test)

 

How is it possible to differenciate for example between mild and moderate in autism when there is a high IQ result execpt may be in language mainly expression. Are the criteria for assessment constant or do they depend of the kind of methodology use like there is for IQ test??

 

Please Zemanski could you direct me to the post relating to the subject or may be I am asking too much??

 

A book from the forum it sounds good and it could be review every two years.

 

By the way zemanski thanks for your post always so interesting and full of informations and knowledge. <'>

 

Malika.

[nellie]

I'm not sure if it would be correct for the forum to get involved in projects, campaigns etc. The forum can't speak for everyone, we all have different viewpoints and opinions. It's a safe place for everyone to get together and share experiences, advice and support. That's just my opinion though, I'm not sure what the administrators would think.

 

Nellie xx

[littlenemo]

Kathryn it is a cool idea , but I think Viper hit it on the head - it would raise public awareness of the site as well as AS.

There are quite a few people here who would not like Wapping journalists to make up stories from some of these threads. It wouldn't be the same - it would feel like we'd been burgled.

Shame, but it's still a great idea

 

nemo

[Kathryn]

I may be wrong, but I don't think anyone on the forum would have the extra energy or time to pull a book together

 

I'd quite like to write a play one day though. Theatre is a powerful way of getting a message across.

[Zemanski]

we could just have a big party in the batcave to celebrate good old Hans actually bringing our kids' problems to the attention of the world

 

took a while to actually get the point across and we're still working on it but it's definitely worth celebrating

 

don't worry, Nellie - I don't think any of us are daft enough to do anyhting like a book without full permissions and the go ahead from you lot, we're far too scared of Judge Thredd - but it is quite a nice idea

 

Malika try these threads:

 

http://www.asd-forum.org.uk/forum/index.ph...t=0entry27467

 

http://www.asd-forum.org.uk/forum/index.ph...t=0entry39122

 

http://www.asd-forum.org.uk/forum/index.ph...t=0entry27462

 

Z

[nellie]

It's a great idea. I don't think anyone has ever written a book of parent/carers experiences.

 

too scared of Judge Thredd????�

He's a pussy cat!! Actually, more of an old Tom cat!!

[LizK]

I am not too sure if AS is a "mild form of autism" strangly enough my son who has a ASD DX because he had language delays.......

 

I describe my son as 'mild' ASD because language development aside his other traits are not currently over-impairing for him and I know that things could be an awful lot worse for us so I try to be thankful for how he is and we are . It doesn't mean to say he doesn't have problems and difficulties that need addressing or that I don't find parenting him incredibly hard at times, he just has different needs which are equally as valid. It is a real bugbear of mine that most of the local ASD services are directed towards those with lower functioning autism and there is little help for kids like my boy .

 

I dn't know if DS will technically fulfill the criteria for AS due to his language delay but people automatically assume that if he has mild ASD he must have AS which I'm not sure, for us at least, is the case. Surely with AS the severity must vary from person to person from mild to severe but assuming that AS is synonymous with mild ASD is clearly wrong. I think on forums like these we are a self selected bunch to a degree. IRL I know of two friends who children both likely have AS but as neither is particularly affected by it emotioanlly or practically and it is managed withine the family and school they have never pushed for it to be taken further. I guess those children may be classed as 'mild' but clearly others aren't.

 

Anyway back on topic

 

The forum can't speak for everyone, we all have different viewpoints and opinions.

 

I for one would objest to the title 'helpful hints for happy aspies'

 

Liz x

[Malika]

Thanks Zemanski once again.

 

Liz If you refer to Tony Atwood in his books about Asperger he says that from his point of view ASD children who develope fluent language should be classified as being children with Asperger because once they have develope fluent language they are not any different of Aspie you can find this in Tony Atwood best seller "Asperger Syndrome a guide for parents and professionals"

 

As for raising awarness I think it is a complex subject but one thing I found is that we have to clarifie where Asperger should belong to and may be accept that it is a disability and should be classified as such, no offence intended.

 

All the best.

 

Malika.

[Malika]

Hi again

 

Just forgot to say that I agree with the opinion that Asperger is a form of Autism.

 

Malika

[Zemanski]

AS is legally a disability, it's just that because the word 'mild' is attached to it people choose to ignore it as such.

 

my argument about autism being autism and AS being autism is only that I think the autism is there for everyone, and that it is the severity of the effects on a person's life that can be mild or severe. Com has had periods when I could say that his AS has had little effect on the quality of his life, in Com's preschool years I think he actually had more benefit from it than difficulties, however, at times of crisis (last year in school) his AS has enormous impact on him and can only be called severe. A child who can't face life to the extent that he spends his time in school under a table growling incoherently, unable to speak or to tolerate touch without pain, is definitely severely disabled (although more by the lack of support and understanding than by the AS itself).

 

Z

[oracle]

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Edited November 3, 2006 by oracle

[oracle]

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Edited November 3, 2006 by oracle

[Malika]

Hi Zemanski

 

I agree with you completly. I feel that my son his not recognised because he does not have too much behaviour problems but as soon as some pressure is up at school I have problem at home, and he seems to isolate himself much more having terrible phases of tics, what is batlantly unfair is the expectation put on our children which just make them worst. This why support and help are so much needed at school

Have you read what Tony Atwood says that it is only the confrontation with the society which make Autism apparent when our children get time alone with no pressure their autism is hardly noticeable, one of my friend who had a trainig in a school for severe autistic children (part of her nursing degree) thought that my son was not Autistic however once she observed him more she agreed that he was definitly impaired with his social skills even if this was not obvious at first day sight.

 

Well just wonder if AS his legaly a disability and my son as been diagnosed with ASD (at the end of the spectrum as they say) why have I been refused DLA???Is there anything I can do for him to be recognised as disable? Sorry I think I have highjack the thread??

 

Malika.

[Zemanski]

I think maybe you are right Carole but Hans did something wonderful for AS kids - he recognised them

 

without his work they would have no recognition as having a disability at all

 

so pehaps we don't need to abandon him altogether but see him as the person who brought our children into the ASD fold by recognising their autism and that now that the recognition of AS is there we need to thank him and move on so that our children can be acknowledged as having a real disability which needs real support alongside other ASD children.

 

Zemanski

[call me jaded]

Diagnostic Criteria For 299.80 Asperger's Disorder

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

failure to develop peer relationships appropriate to developmental level

a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people)

lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

apparently inflexible adherence to specific, nonfunctional routines or rituals

stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning

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

 

F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia

[call me jaded]

Forgot to give the link:

 

http://www.as-if.org.uk/DSM-IV.htm

 

This (on the different criteria) is worth reading too:

 

http://www.as-if.org.uk/criteria.htm

[Viper]

don't want to rock the boat here but if Hans Asperger had not named the condition after himself and just said it was autism we may not be having this discussion at all!!!

 

Viper.

[oracle]

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Edited November 3, 2006 by oracle

[nellie]

It was Lorna Wing who named it Asperger syndrome. I believe Hans Asperger named it 'autistic psychopathy'

 

http://www.mugsy.org/wing2.htm

[phasmid]

I think the book is a wonderful idea. Poems, ASD life tales (anecdotes, bouquets and brick-bats). We all have stories to share. Phas Jr has already been printed (he writes some amazing poetry). When you know his AS dx they bring a lump to your throat:

 

If all the world's children...

 

If all the world's children

were as happy as can be,

and we could see everything

that they can see.

 

Their laughter, their sorrows,

their pains and their joys,

it wouldn't matter if they

were girls or boys.

 

It doesn't matter about their

skin or race,

and it will never matter

about the colour of their face.

 

If all the wars were stopped,

and the fighting ceased

what would the children see?

peace.

[Suze]

Perhaps the only way forward now so that provision and support is available is to DX ASD and then where appropriate AS .I looked out my sons DX from the physch .It,s worded as follows...........I felt that there were enough difficulties to use Autistic spectrum disorder as a way of encapsulating ***** problems.This would be most likely to be in the high functioning end of the spectrum akin to Asperger syndrome................does this sound a woolly DX ?I,ve never worried about this before but I guess how these DX ,s are written by all these clinicians that DX our kids has a huge implication on the help they may recieve.