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The Lost Generation There is a lost generation of people with Asperger's who are in their thirties: they were born and indeed grew up before the condition was recognised, and missed the boat for an early diagnosis, or maybe for any form of diagnosis, they fell into the arms of the mental health services or perhaps their families were just left holding the baby and it may be too late for them to achieve what they were capable of. However, the found generation who are getting diagnosed at average age of 11, but often younger nowadays, are still at risk if the individuals in the health, social and education services don't know what to do. It is still the case that GPs don't recognise Asperger's. Nurses apparently don?t how to listen to them, psychologists have not met any before, and teachers don't know how to amend their classroom practice. A friend and colleague of mine, Robyn Steward, who herself has Asperger's was talking to me about nurses. She will only go to one specific person because she understands. How do you know she understands?? I asked. She tells me what she is going to do before she does it, and she shows me the swab or whatever she's going to use before she uses it. Not rocket science, and what shocks me is that the other two nurses and GP she could use don't do this. All you have to do is to ask Robyn what she needs in order to avoid a major panic fit in which she will be screaming and so frightened that she becomes out of control. Of course, you also have to be willing to let your patient tell you what to do. I recently visited a young man in his secondary school. He was not coping and had the senior man on red alert to confront the next crisis. I followed him around and noticed that he not working in any lesson, but chatting, drifting, messing around and invariably getting away with it. I suggested that each teacher noticed him by name and directed him to sit close to the front and always looked at his work as the lesson ended, but they could not make the necessary changes: their ethos prevented them telling students where to sit, and the rest was too much to contemplate. He fell out of school and his mum began the fight to get him into a special school. Very expensive, very divisive, and perhaps not necessary. But not rocket science. There are a lot of people who need some help, but it is not one size fits all help that is needed, but highly specific individualised support that can be trusted. Mainstream services do not have a complete understanding of this condition by any means yet, and some of our early assumptions may not be good enough. It is clear to me that current knowledge and services are not educated enough about what is needed, even down to the basic customer care level of finding out what the person needs in order to feel safe and then delivering. When I work with a family or individual with Asperger's, I do a lot of listening and use my energy to support them in achieving something that makes sense to them. Eventually the ordinary problems come up and I try to help them to face these and find solutions, and slowly, in some cases, they come round to a more positive way of thinking in which they are willing to talk to the nurse yet again, change their GP, challenge the psychiatrist who wants to prescribe some psychoactive medication or seek another meeting at the school to discuss a difficult teacher. It does seem to be an inhospitable world for someone with Asperger's. It seems to me that it is a bad card to be dealt in the first place and us neuro typicals ought to expend a little more energy on finding a way to accommodate our socially disordered brothers and sisters. Yours, Bill Goodyear http://www.bbicoaching.com/billgoodyear/ _________________________________________________________________ Txt a lot? Get Messenger FREE on your mobile. https://livemessenger.mobile.uk.msn.com/ ________________End of message______________________ This Disability-Research Discussion list is managed by the Centre for Disability Studies at the University of Leeds (www.leeds.ac.uk/disability-studies). Enquiries about the list administratione should be sent to [log in to unmask] Archives and tools are located at: www.jiscmail.ac.uk/lists/disability-research.html You can JOIN or LEAVE the list from this web page.