It's unbelieveable

[elaine1]

My god, im sitting here with an open mouth!

just an illustration im not really yellow and only have a head.

anyhoo, that bloke needs the sack and pronto. How on earth could he be allowed to do the job!

 

as you say what hopes have we got when ppl like that are 'in charge'.

[Kathryn]

Personally I am at the point now where I think that a dx of AS is a definite handicap to a child or adult. Maybe we need to lobby to here for 'inclusion' meaning that AS is included in the ASD sepctrum and not sidelined by professionals as mild autism?

I agree Carole. AS is synonymous in the popular consciousness with "quirky but normal". As I've said before my daughter refuses to have anything to do with the AS label. She feels it places expectations on her that she can't meet.

[call me jaded]

Things have moved on a bit since I last looked at this. Apparently it is all needs based now (yeh, right). You may find this helpful, Carole. It's eligibility criteria for access to social care - section 16 gives the four different categories:

 

http://www.dh.gov.uk/assetRoot/04/01/97/14/04019714.rtf

 

All very woolly, but setting eligibility criteria on an AS or ASD label is not an option.

 

The DRC has this to say on assessment:

 

6.2 While we would certainly support the general principle that the threshold for eligibility for support should be set as low as possible, in it's present form the guidance is far from clear on what kind of threshold authorities should apply. We believe that minimum eligibility criteria should be specified, either for particular service areas and/or for each of the four categories of risk specified in the main framework for assessment, and that this information should be made available to all potential service users.

 

http://www.drc-gb.org/publicationsandrepor...ction=he&id=179

 

 

Clear as mud. I have a fluey virus and can't think straight at all, very confusing.

[Flora]

when I write letters/ speak to people about Com these days I start by saying he has AS, define AS as autism and then continue to talk about autism and ignore AS altogether if I can

 

 

This is exactly what I do, I say he has AS then go on to say... 'which is an Autistic Spectrum Disorder'. Then I refer to 'ASD' all the way through rather than AS.

 

Lauren

Edited September 18, 2005 by Lauren

[oracle]

deleted

Edited October 30, 2006 by oracle

[nellie]

Carole,

 

I have thought for some time that people are being diagnosed with AS when they don't fit the criteria. I believe this is for several reasons, the authorities prefer AS because it means less provision, parents find AS more acceptable, children with a late diagnosis have better language and appear more able (usually down to the extra work that parents put in)! It's important to look at a persons early years before making a diagnosis.

 

It's often the case that parents mistakenly believe provision will be easier to get with a diagnosis of AS.

 

It all depends what you call a learning difficulty. I believe someone can be highly intelligent but still have learning difficulties. It's about time the definition of learning difficulty was made clear, especially when talking about autism.

 

It is possible to get resources for an adult diagnosed with AS if you can prove that the need is there, but it ain't easy, especially as it's usually mental health your dealing with.

 

A very frustrated Nellie xx

[Flora]

My son with AS has a slightly above average IQ, but this does not reflect in his academic work BECAUSE he has LEARNING DIFFICULTIES. Now this makes perfect sense to me so why doesn't this guy get it?

 

B I G Loooong sigh......

 

Lauren

[call me jaded]

I do think a point could be made quite easily about 'an uneven profile' in ability.

[Primine]

First and foremost: this is the trouble with labels. They provide pseudo-explanations. Every child on the spectrum is different and needs different programming to help them. However we have no choice but to apply labels occasionally to help express position on the spectrum.

 

While AS is considered to be lower on the spectrum they do still need help, of course. The problem arises in that when someone demonstrates more severe characteristics of autism there are many things that can be done to help them. There are extensive methods to improve functioning and learning that would not work with AS children.

 

With AS children there is a much higher chance of obtaining normal functioning, given the same treatment as provided to the severe children. The moral dilemma is the utilization of resources. There are simply too many people out there and too many governments would rather spend money on military than on health and aid. I'm sure you must be aware that well over 75% of children with Autism with never, ever reach normal functioning. The hope is to improve functioning, and sometimes the goal is simply to get the characteristics similar to the same characteristics of AS. So do we try to get the most severe cases to be less severe, or do we focus on the AS children that have a higher chance of actually reaching normal functioning?

 

As your research has found it was correct saying that a characteristic of AS is normal or near normal IQ. This does not mean they have normal functioning. Yes, they still do need a great deal of work. I agree that they should be treated differently, but BOTH should still be treated.

[mossgrove]

Carole

 

This entire discussion makes most sense when you consider that the SS perspective is not 'How can we help Autistic children of all shapes and sizes to fulfill their full potential and have happy and rewarding lives'

 

The SS perspective is 'this is going to be expensive, how can we limit our financial exposure'. Declaring whole groups ineligible for SS help is the quickest way to do this, and the device of sttating that someone of average or above average iuntelligence doesn't have learning difficulties is their chosen method.

 

I agree about the NAS. They are much to close to the establisment IMHO and seem to lack insight into how things are in the real world (Broad support for reducing statements and replacing them by trusting LEAs/Schools to do the right thing with theor delegated provision is the most startling recent example). They also have a rose-tinted view of kids with ASD's in mainstream that is not helpful.

 

 

Simon

[oracle]

deleted

Edited October 30, 2006 by oracle

[Zemanski]

this is exactly what we have had here from SS learning disabilities people over the last year - the only difference being that the person concerned was expressing his worries about not meeting AS people's needs

 

on the other hand he was very reluctant to let go of the IQ of 70 as the cut off for learning disability - it would make them responsible for too many more people than they could BUDGET for!

 

Zemanski

[Primine]

I have just consulted the DSM-V to help my understanding with the issue of Asperger's being considered a MILD form of Autism and I am confident it is because of points D and E in the diagnosis:

 

D. There is no clinically significant general delay in language

 

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behaviors, and curiosity about the environment in childhood

 

I think the perception that it is a mild form of autism stems directly from the criteria of the complex.

[oracle]

deleted

Edited October 30, 2006 by oracle

[Zemanski]

Com had no delay in general speech, vocabulary or comprehension but he does have a huge delay in pragmatic language

 

- why doesn't this count?

 

Zemanski

[bid]

And what about the 'high-functioning' children who are under such acute stress and so depressed that they attempt suicide?

 

Or doesn't that matter??

 

Bid

[Primine]

I can't really voice any opinion about autism being co-morbid with depression or related disorders. I simply do not have the experience, education, or training to deal with such an issue factually. I know very little about the diagnosis process, or re-evaluations. Sorry...

[Suze]

My son had no language delay, but developmentally was very slow, ate pureed food till he was 3, could,nt feed himself, struggled to dress himself when he started school.Still wet the bed at 6/7 yrs. Could,nt catch a ball or hold a pencil.Failed alot of his milestone tests.He was also given a DX of ASD,most likely to be AS. does this mean he floats about on thespectrum.I,d be interested to know how everyones DX is worded .We just recieved a letter with it written on from the physch.

[Flora]

my son has no language delay, he is a good reader and has good comprehension (to a point) but he's suffering from acute anxiety and has made no progesss academically in the past 18 months to 2 years. Surely this constitutes a learning difficulty? If it doesn't then it should!

 

Lauren

[Zemanski]

Primine,if you read through threads on this site you will find, over and over again, references to stress, anxiety and depression, and often attempted suicide in very young people - my own son was 6 when he first tried to kill himself because he just couldn't cope with school, because life was so miserable he didn't want to live.

 

This is such a common factor in so many of the lives of autistic people using this site or cared for by those using this site and others we know that most of us consider that depression is a feature of autism when the autistic persons needs are not being met - it is not comorbid in the sense that say dyspraxia is considered comorbid as I for one believe that depression in most people with autism is environmentally induced.

 

I think that for most people with autism anxiety is the basic problem - if people are free to relax they can learn, this is true of all people, autistic and NT alike.

 

if anxiety is minimised by meeting needs in the most appropriate way for each individual then depression is much less of an issue.

Com's stress levels rise when he has to use the changing room for PE so now he uses the medical room. He has his own LSA so it doesn't use any more resources to change in a different place but the difference it makes to Com and to his behaviour is immense.

For another person it might be the pain of bowel problems or the toxins in the system that cause anxiety and hence depression. It might be the lights or the ticking of a clock in a classroom. or the noise in a corridor, or a particular smell - the toilet cleaner, floor polish, toothpaste, or the inability to get a thought out ......

each time you identify and deal with a cause of anxiety you reduce the risk of serious depression.

 

as for diagnosis and the rights and wrongs of labels most of us are just as at sea as you, but there are people here who know their stuff and do have training and experience; some may even have the qualifications to diagnose, you never know. Most of us have been through the diagnositic process, or are going through it at the moment, either ourselves or with someone we care for though

[Primine]

Thank you for educating me Zemanski! I like to think that is what a huge part of my job is: reducing stress and anxiety. Today in my CPI training (proper ways to respond if a child's anxiety is noticably rising and then if they get physical with you or another person) the first topic was looking at stress levels and ways to deal with it. We were told the best responce to anxiety was support. The question posed to the class was: what percent of the time do these kids feel anxiety or stress? Most of us answered between 60% to 90% of the time. The answer: 100% of the time. It then stands to show that our job is to be supportive 100% of the time.

[Zemanski]

sad but true

 

 

Z