Laz

Autistics do not feel the cold So said a national autistic society support worker once upon a time

To my understanding there is a school of thought that emerged saying that IQ testing in any part of the autistic spectrum is irrelevant. But then saying that these tests go by the bell curve theory of how the population should be, which is tad bit presumptive for a start. But on the otherhand when you break them down into more narrowed areas of interest quite a few studies have tried to attach a link between a high verbal IQ and better life outcomes in children with autism. With regards to the confusion that appears to have come about on this thread. I have been under the impression that by far the greatest confusing factor in autism is that most carers and professionals have a difficult time seperating learning disability from autism and that is were the confusion lies. There are also people who have "aquired" autistic behaviour through trauma that has resulted in some kind of brain injury. The most stupid label i've come across is "autistic traits" i mean what on earth are they going on about? In the future are people going to start saying they have low functioning asthmatic traits? Its a bizzare use of language that could do with being stopped ASAP. I find that rather strange given that the valuing people document pretty much states clearly that autism in of itself is not a learning disability but that people with autism can have a LD in addition to being autistic. Just as autistic individuals can be gay or be from ethnic minorities or have downs syndrome or any other social characteristic. In the future I imagine they will be revising the diagnostic criteria because even Lorna Wing has not been happy with the out come of the Asperger syndrome diagnosis being semi-detached from autism. She did an article called "Opening Pandora's box" awhile back looking on the decade since the introduction of the asperger diagnosis. And with regards to the MMR doctor. IMO he was an arrogant fool when he worked at the Royal Free, he's an arrogant fool now. Hi Laz - I've tweaked the last bit of your post in line with forum guidelines. While your opinion's are perfectly vaild, the final sentence - speculating on his motivations - was a bit too personal, given the usual forum policy not to comment directly on professionals. - BD

My experiance of education certainly was not impressive. My primary school tried their best to get sent off into special needs education, which lead to my diagnosis in the first place. From a personal perspective I fail to see what mainstream education taught me besides reading and writing that did not require extra tuition at secondary school to make up for failures at primary level. Were I not fortunate to have parents who earned a sufficient amount to afford that time outside of school to catch up I don't know where I would of ended up. It has left me feeling that if i ever start a family that i would consider home schooling rather than subject them to a system that i personally feel does not prepare you for adulthood at all. I feel the philosophy of the education system needs to be re-built from the bottom up not simply little adjustments or re-arrangements of the deck chairs of the Titanic that previous governments and the current one seem to employ.

Yes that is actually the entire crux of problems we have, not just here in the UK but around the world. We do not have a service framework model based on the best way of getting improvements in life chances and abilities for autism or AS. We actually have data to show what works best in for preparing children and teenagers the best chances, ironically alot of this data shows that the low IQ "low functioning" (I hate that term functioning, its human not a robot) individuals are the ones who by far make the greatest improvement with the right support and the "High functioning" have a distorted outcome were they under achieve or fail to get a foothold in independent living in the first place. I would say a potential model has to look at two groups if we are to simplify things down to the fundamentals. You have people with apparent problems on the surface, they attain low IQ may have problems communicating verbally get picked up usually sooner rather than later. The solutions require potentially a lot of work from parents, education and healthcare to help the person get the most they can out of life In contrast you have people who's problems are hidden on the surface. They attain average or more IQ levels, their verbal ability to communicate while unusual is not given much cause for concern at an early age. The solutions, potentially, are more straight forward then the first group but are harder to recognise. Because the problems are most likely going to go unrecognised into adulthood you loose valuable time in which interventions could of helped to give them a stronger foundation for adulthood. When you have adults in such situations with a history that has lead to the person becoming known to mental health or whatever service they encounter it becomes quite complicated. You want to minimise the risk and the numbers of people who end up in such situations.

Well you are getting hung up on the name and the stigma attached to "learning disability" just because of the title does not mean that such a professional is unable to help you. In actual fact they probably would be far more useful to you then a social worker potentially and the primary skills of the job is around communication and supporting people under the inclusion philosophy originating from the social model of disability (which is getting a bit old n cranky now but its still a robust approach) Its not like the nurses you see on the TV or in your local hospitals, we don't wear uniform we don't have trainning focused on all the practical stuff that you assume all nurses do. Infact if i were to reverse your statement the fact you do not qualify as having a learning disability because your IQ is not below a certain level is used as an excuse to deny you such services that you seek. So really I would ignore the title of the professional I might as well be that Advocate you were talking about or be called an autism nurse. Because at the end of the day the skills this profession has are relevant to you and what you require. So let me re-assure you that fundamentally you are getting hung up on a name. It is a confusing title to begin with begin with. Its a small area, only 4% of the entire nurse workforce. Not everyone has heard of it nor is familair with what we do. We don't neccesarily work with people who have learning disabilities to begin with, we can be in spinal injury units or in prisons and the mental health services.

Hi everyone. I haven't had the time to post on here in quite awhile but I just read through this post with interest given that I recently wrote my final assignment on autism transition for my Learning Disability Nurse trainning. I am someone with AS diagnosis myself and I tried to make an argument that Learning Disability nurses should be the profession to become primarily involved in AS and ASD provision given that the skills we have would be easily adaptable to a service. Ive recently written a small peice for the NAS for their May issue of Communication talking about my experiances and promoting the idea that other people with AS should consider this sort of work as a career option who are coming to the end of their secondary education and/or a-levels. There is an adult service for AS based in Liverpool that consists of a Speach and language therapist and two nurses who have Learning Disability and mental health nursing registration as well as a clinical assistant. They sadly only cover the are of Liverpool centre at the moment and no trust is really interested in extending such an idea. Though Sheffield recently hinted in its consultation document for "Better services for autism" That they want to construct small autism specific teams to deal with adults out there who do not fit the bill that would let them access learning disability services. If theres any interest I can post up my 4000 word assignment? I can always edit out all the background riff raff and Harvard referancing so its an easier read. Would there be any interest in doing so? I shall return in the morning as im off to do a night shift now but thankyou for an interesting read.

You know i do find it bording on insulting that somehow by being AS your pre-destined going to collapse into peices with a mental health problem at the very minute you encounter social isolation, struggle with work and education and all the wonders life throws at you. Ive had my fair share of meloncoly moments but ive hardly got my aunts schitzophrenia or my uncles bi-polar depression....yet...but still we dont all go mad the minute were under stressed Wider society when you think about it should be utterly ashamed that bright intelligent young people are ignored, neglected and abused to the point that they suffer nervous breakdowns, mental health crisis and clinical depression. Its really an utter disgrace that this is not isolated tragic individual cases but situations that are occuring on national level with hundreds of people. But just think, if you think being asperger is bad imagine being learning disabled! Thats even worse

I remember going to the aspect action day last year in manchester and filled out the survey to make this report. There were sadly a few chaps there who i knew from down south and yorkshire way who seemed intent on disrupting things and shoving their problems and issues in everyones faces without letting anyone else speak but well thats the middle aged and embittered for you...Thankfully that doesnt appear to have disrupted the content of the report though i imagine there were alot of asperger people who never even knew this took place in all sorts of situations or disengaged from a wider asperger community of any kind. Its a blessing to come right now when im out promoting an asperger specialist service here in Sheffield its given me an evidence base that just hasnt existed as solid literature/research before. The recomendations in the report slot nicely with what im hopping to do next may when i qualify as an RNLD (Registered Nurse Learning Disability) Does anyone have any recomendations on where i can start lobbying here in sheffield? Im not sure if its worth me going to the various MP's approaching the council or NHS trust? Im meeting with the local parents group here tomorrow night to formally present what ive got planned and ive already brought it up on a thread in general discussions that some of you had fed back to me on. Im just not really sure who to approach so i guess im just going to bombard as many authorities as i can send letters and e-mails too i guess

The results of the aspect action day from april last year have been published on the sheffield hallam autism centre website. Its basically research conducted on 256 asperger individuals (including myself) on our needs and what is being done well and not so well and were the gaps are in services. This kind of service slots in very nicely with the recomendations that are suggested by the authors. So now i have some evidence to pursue this with. Im meeting the local support group on wednesday to formally present everything. Have to see how things go, im going through the local trust and contacting the various professionals involved with aspergers to see if i can slot it into existing infrastructure like the local asperger councilling service run by the NHS. Anyway early days yet but if anyone still has an ideas or feedback please get in touch im open to new ways of looking at this thanks for your time and energy http://www.shu.ac.uk/theautismcentre/ the report is here if anyone wants to have a read.

They are fantastic pumpkin like vegetables. My father grew some back in 2005 and i ended up filling the boot of my car with some of them. If your a gardener they love acidic soil and if the conditions are just right for them the plants will spread everywhere! They make fantastic potatoe substitutes and they are one of the most highly concentrated food to contain potassium. Perfect food for diabetics to help out the kidneys. You can also make soups out of them they do take awhile to cook though but its very nice traditional winter food.

Can I ask what the universities are that people are referring too?

I appreciate that need exists with parents and younger asperger children, that will have to be something for the future really. One step at a time really i have to get this working and see how it goes

Well done Chris. Im also a student with aspergers at Sheffield uni but I do nursing. Just a coincidental observation but the department your course is based in is placed literally on the opposite side of the road as the local NHS asperger councilling service at St Georges.

Thats a fantastic website. My father is an engineer/Tool maker i'll have to show him that when i get the chance

To build on your point canopus about the access to sensative AS data to support groups you might be familair with a character who joined a welsh NAS group. He actually had convictions for sexual offences claimed to have aspergers diagnosis (all happened in ireland) and under the guise of research tried to obtain naked pictures of autistic children from the support group. A suspicious parent reported him and he went on the run back to Ireland were he was arrested (I think?) Its on the BBC website somewhere. Also another problem with having that kind of data open is you have people who say they are "Self-Diagnosed" with aspergers. While im sure there are people who are genuine in their intentions who for whatever reason havent pursued an asperger diagnosis its a great way for any person with dark intents to infiltrate an asperger support group. Sheffield is quite unique in that it has a learning disability case register. Its been a fantastic resource to track research and monitor trends in the local population. It also helped the local services plan for future needs like for example that there are going to be quite a significant amount of people in the learning disability population who will have quite profound learning disabilities compared to the current adult population because more are found to be surving to the age of 18 and over with improved medical technology From a scientific study/audit/resource management point of view its a good idea. But then your assuming there is the will in government to implement a national asperger framework. However. We will soon have a study coming out from Sheffield Hallam university that you may find a foundation on putting an argument backed with evidence together.