gladysmay

thats a good question - some subjects seem to get suggested time and time again, maths, IT, but not everyone wants to do those, especially by educationalists. I am enquiring in a more general sense - hoping that some Uni's are pro-active and welcoming no matter what subject:)

does anyone have experience of or know of any UK universities that have particularly good (or any) autism friendly support. I realise they all should be making 'reasonable adjusstments' but in reality, they vary a great deal, ranging from dont know anything about it, to welcoming. thanks very much. may be necessary to make a change (unfortunately) - so heres another question, how does one change to a new uni that you migth prefer, first year, and what evidence might be expected to support the request, if at all possible:)

some really interesting debate going on here thanks to all:) putting it another way, a young male is picked up by the police and they misinterpret some behaviours/reactions as guilty of hiding something or being obstructive and lock them up in a cell, causing even more behaviors and so on.... what if the young male is not diagnosed but rellies suspect asd but gp is not knowledgable... sorry to be vague but the above scenario is nearer to the root of my question. how long does it take to 'accept' a diagnosis, maybe some prefer not to know but may experience disadvantage at some point, true, this may be just an inconvenience but if the fallout were say, more tragic?

yes, Kathryn, it is a complicated scenario on all kinds of ethical levels as well as trawling through statutory duty or legal positions on rights etc, which seems to be what families end up having to try to understand and deal with,so easy for all involved to get it wrong. can we just standby and watch someone fail, we would not allow someone who was sight impaired to for example to take the wrong exit, we would provide alternative means of communicating the much needed information to be fair and evenhanded. thanks for some very interesting input on this:)

totally agree, nt's make 'wrong' choices all the time and do not come under the scrutiny just for being 'disabled' and I believe this is against the law, possibly Human Rights and some other acts cant think of right now, what I am getting at is scenarios where the root problem is nt professionals mistaking asd behaviours as getting it 'wrong' and then taking action on that, another professional who is very aware of asd behaviours steps in and says, whoah, you cant do that, but may be over ridden? complex but these things are happening.

thanks, I guess I am thinking in the area of 'being led astray' or being vulnerable to manipulation by those with the power to make decisions and maybe that individual should seek legal advice or maybe an advocate but is unaware of how vital it is to do so, especially if those doing the manipulating are not actively seeking to do harm but misunderstand autism??

I am a staunch supporter of the needs of anyone being requested by the individual concerned, in a kind of 'whose need is it anyway?' approach, what is an inconvenience to others is not a need in the strict sense of the term! very occasionally you come across folk who appear to be in need by all other indicators but who do not recognise this themselves (adult) at what point does one, and can one, offer or insist on additional support. also, it seems different agencies have different ideas about levels of need and can go OTT or do nothing.

http://www.dotheduty.org/ found this today digging about for disability rights stuff, seems interesting.

another one to beware of is the charity fundraiseres who stop you on the street - they can be very skilful in requesting signatures for DD's and before youknow it, part of your loved ones DLA is going to a small charity somewhere (ps - I am not knocking donating to charities persay)

this is all too familiar and happened to me but several years ago now -shame nothing has changed, I ended up keeping my child at home but signed off by my doctor as unwell to cover my back as the school welfare threatened me over non attendance - truth is I could not keep him in there, he always came home and then I was blamed. the school should be providing an appropriate learning environment for your son and the fact that you are awaiting a diagnosis should help them to understand the situation. kids with AS can be overwhelmed by the shcool environment and need adjustments that take into account their AS, are you able to make some suggestions in the meantime. I would ring nas helpline and ask for some info, also see their website, print off the info on the section I think it is in professionals link, for teachers etc and give it to the school, I did this with my college, that way they have the info. try to be calm with them or they might resist and what you really want is for them to help your child, as soon as the dx is in place you can assert your rights. I think SEN re the definition of a learning disability should mean even without the dx you can demand support. I hope this helps. best wishes.

Hi Kathryn, good to hear from you too:) yes, he is doing fine thanks. hope your daughter is doing well also. I have tried Homestart but there is a waiting list and we bump up against the age old problem of communication with NT staff with no training in AS. I am hoping to arrange some staff training at work (all subject to approval of course lol!) it is hard to find outreach workers familiar with these things.

Hi All, seem to have been away for a while and changed jobs, become a grandparent blah blah blah:) I am hoping I can find some advice on support available to a young single mum with Aspergers ADHD and Tourettes. hopeul to find an outreach worker who can come to home and provide practical support with a new baby. any helpful suggestions are most welcome, many thanks:) I have been doing some digging around but can only find the NAS befriending scheme (?) may not be suitable and mostly support for the parents of those with AS and or associated conditions.

Hi, the AWARES conference has been extended, Donna Williams is on that.

Hi, the basic answer to this is that the Trust will not be advocating one method over another. I will come back more fully later, I woudl encourage anyone with questions to use the AET response form and raise anything you want to:) Having been in touch with a spokesperson for the Trust, it is my understandng that the Trusts aim is to include as many people as possible to help to shape the Trust to be a tool for those it aims to support, and that although Treehouse are a partner along with The Council for Disabled Children and NAS, as previously mentioned, the Trust aims to give independent advice to parents and professionals. I hope this of use, do please contact AET and they will be happy to answer you :) http://www.autism.org.uk/aet http://www.ncb.org.uk/Page.asp?sve=785

I have raised this question with AET and will come back with the reply:)

http://www.nas.org.uk/nas/jsp/polopoly.jsp...502&a=14706 everyones point of view shoud be heard, you are right to say that there is not one size ftis all, this was echoed in the speeches.

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1498

I have tried to explain to college that I am pulled in several directions and how complex the difficulties have been (without sounding pathetic or blaming) but in reality having struggled for so long and all the fallout, lives turned upside down, ###### jobs, no money blah blah, anyway, I had a disappointing response suggesting some lack of 'parental support' that the tutor is doing all the supporting!?! this means nagging and suggesting some things are 'made up' - really I could cry because the lack of any realisitic understanding of just how fragile it all is, being mentally and emotionally exhausted, well its just far too simplistic to say, oh well, then change this, do this, do that, I cant see things getting any better, the tutor has a certain view and thats that, I dont care about their view, should have gotten used to the brick wall by now. It has been one hellish day. I dont know what else I could have done, the sibs do have their own stuff, guilt, anger and so on, as I have mine, we are only human, we do the best we can, well one thing for sure we wont be giiving up!

thanks for that Kathryn, I just hope we can work something out, if she had to do another year I dont know how I could fund it and I know she just wants to get away to a new environment. everything seems to be so fragile, its takes so much effort to keep it all in place. well fingers crossed xx

I feel so useless now, having felt so great about my son's progress it is his sister that is failing, the college has informed me they expect her to fail, she has an offer for a university place and is so looking forward to it. the years have been stressful to say the least, and I am all too aware of just how much the sibs, all three of them have been neglected with the relentless struggle to obtain diagnosis and support. of course, I have done my best and realise they have not complained though they had enough to complain about. my daughter had a setback with an injury and missed afew weeks and has fallen behind but overall has also struggled to find her identity and gain recognition for herself. if she fails this course it will be a real setback for her, they think she is awkward and lazy, I know she wants this so why is it all falling apart.

have now sorted this! now lets move on the next impending doom, not sure what page I'm on!

oh joy :)

Hello Curra, I do feel for you, so much of what you describe resonates with me, my son is now 20 and his school experience was hell. He did spend a lot of time out of school which was for entirely for his benefit, every time he returned all the difficulties arose again. Can your son attend part time and do some work from home? we had an re integration package where my son learnt on the school site but was one to one with a teacher for a couple of hours in an old office come store room (?!) he was okayish with that but then had problems being 'seen' to be doing something so different from the rest, I truly recognise that every aspect can be difficult and has to be thought through. It is not always workable to have your kids at home but it does seem to be the best option, if you can find an internet school, some AS kids do this and the NAS would no doubt have some info on this. I dont know how much it is possible to shoehorn our kids into the current education system especially during their early years and teens. sadly the system is way behind realising their needs which are so very different to the model available for the NT world. my biggest challenge has been getting this recognised and accepted which can release the tension and worry about fitting in for our kids. very best wishes.

Hi Peppa, my boy did a lot of battling at home and at schoole when he was much younger, I found that a big problem for him was going in to the school environment and his home outburst were centred around this and did not happen during holidays and once he was assured he would not be going to be going through the fear and uncertainty this presented every time. this may not have any relevance to your particular situation but I also found that taking things away or even threatening to only increased his terror. he was using his computer games and lego as time out from this confusing world and just letting him get on with it helped him enormously, I know this appears to go against the grain but this was our experience, he is now in college, does sports, and has caught up with a lot of what he missed. the way I see it, the system the way it was, was not helping, quite the contrary, it was about quality of life, of course with hindsight it is easy to say but he caught up with other skills later in life. I personally felt that I had to rewrite the timetable of childhood for him and fit into his rythm not the other way round, best wishes