oracle Report post Posted September 16, 2005 (edited) deleted Edited October 30, 2006 by oracle Quote Share this post Link to post Share on other sites
Brook Report post Posted September 16, 2005 OMG Carole, how did you keep your hands off him How very frightening to think that someone in such a powerful position has no understanding of AS and obviously no desire to seek the understanding As my son is only seven, I suppose I dont really think too far ahead, but obviously the years will go by and quite frankly reading this worries the hell out of me. Brook Quote Share this post Link to post Share on other sites
CarerQuie Report post Posted September 17, 2005 Our local Autism support group has already flagged this up as a huge area of great concern.I don't think the authorities out there have any idea of the vast numbers of people out there who may well require support of one kind or another in the future. Since services are often financially led,there are going to be huge gaps.It's scandalous.xx Quote Share this post Link to post Share on other sites
annie Report post Posted September 17, 2005 (edited) Carole, This kind of attitude is appalling I would have been shocked as well by the low turn-out of parents/grandparents. We started a support group in our area, the difference in ratio of parents of older children to younger children was probably in the region of 10 to 1, because of this, the parents of the younger children were VERY vocal on issues related to younger children, but just weren't interested in isues of the older child/youth/adult. It was very disheartening, for the life of me I couldn't get any of them to understand that the issues of ASD kids doesn't just stop when they get older. That's that rant over As for the Heads of Departments that were at your meeting. It just goes to show that no matter what evidence they are given, a lack of understanding is still the main sticking point on EVERY area........Education, Health, Social Services the list goes on. I asked my GP recently if Alex could be referred to another consultant because his old one had signed him off her books. His reply was that he was signed off be 'he had made such good progress' Good progress??? - he tried to kill himself this time last year. The only reason he has made ANY progress is because the education system that was letting him down so badly had me to deal with. As you know I had to fight to get him out of 'mainstream' and get him an education package that he could cope with. If it had been down to 'the powers that be' I probably wouldn't have my son now..........'experts' eh???!!!... I don't think so Annie XX Edited September 17, 2005 by annie Quote Share this post Link to post Share on other sites
annie Report post Posted September 17, 2005 Rant still in progress The suicide attempt came after waiting for a physciatrist appointment for 18 months. I had phoned a week before pleading for an appointment as things were going rapidly downhill, only to be told I would have another 14 month wait at least. The next week, when I could have lost Alex, they finally agreed to see him. An attempted suicide they felt was an 'emergency'. Far be it for me to say I'm an expert, I'm not, but I have got enough brain cells and common sense to know that what was building up wasn't 'right', so why couldn't the 'expert's see it Annie <'> Quote Share this post Link to post Share on other sites
Minxygal Report post Posted September 17, 2005 At this point the guy said that he did not feel that AS should really be included into his services because AS is not really autism and he would like it totally seperating from autsim. I could not believe what I was hearing. I pointed out that AS IS autism OMG, How many opportunities will this government look for to take away support for our kids. My son has AS and as much as I love him I wouldn't describe him as having above average intelligence, in fact I would say that mentally my 13 year old son is more 6 or 7. Why is it after all the research that has been done people who should know better still expect miniture Dustin Hoffmans to walk into the room when encountering our kids. The pigeon holes for support are so small and so inaccessable that parents are being left to struggle with kids that could be accessing so much more with the right support. Parents are being left feeling abandoned and isolated through lack of services and support. What's next..........Will kids with AS be labeled part time disabled???? Quote Share this post Link to post Share on other sites
Suze Report post Posted September 17, 2005 Guys, don,t know what to say.........I,ve met that kind of attitude from many peeps, but never one so high up the ladder................HELP!!! Quote Share this post Link to post Share on other sites
oracle Report post Posted September 17, 2005 (edited) deleted Edited October 30, 2006 by oracle Quote Share this post Link to post Share on other sites
helenl53 Report post Posted September 17, 2005 This is really scary - really really scary. I supppose that by necessity we tend to be very involved in what is happening to our kids here and now and in the main they are pre-adult. Roz Blackburn made the comment that children with autism grow up to be adults with autism and we may be putting a lot of effort in to our kids now to have it all fall apart when they reach adulthood because the services are not able to meet their needs. The effect can be seen (but to a lesser degree) between the Early Years and Primary. There is funding and money available for early recognition and intervention and in our area, I have heard that nurseries are doing a great job in spotting children who may have an ASD, but that once they get in to the primary setting it all seems to fall apart You are right to alert us to this Carole. Was the low take up of parents because of lack of publicity. Sometimes, it is hard to know if these are issues that will affect us because of the jargon that is used. Best wishes Helen Quote Share this post Link to post Share on other sites
oracle Report post Posted September 17, 2005 (edited) deleted Edited October 30, 2006 by oracle Quote Share this post Link to post Share on other sites
Flora Report post Posted September 17, 2005 There is evidently some sort of movement going on to trivialise and side line our children with AS. I am having terrible issues at the moment all linked with this:- Trying, and failing miserably, to get my son's school to recognise his learning difficulties and to stop trying to force him to be 'normal' and to 'act normal'. I could weep and scream even as I type this. I had a meeting with them yesterday where they smiled and rolled their eyes and cited 'adolescence... puberty' as to why my son spent 8 hours being inconsolable and hysterical because he can't cope with the stress at school and as to why my GP was so worried he has told us to not leave him alone at any time (in other words he's on suicide watch). Secondly, I have had the problem this week in that when I rang the Child and Family unit I discovered they had 'taken him off file' because he has no problems We have an 'emergency appointment' next Thursday and I'm absolutely dreading it for the reasons stated above. I just wish I had the time and the mental focus (my heads all over the place with this and the upcoming assessment for dyslexia for my other ASD son) to go and stand outside Number 10 and create so much noise and chaos that I end up on the front pages.... I'd quite happily be fined if it would draw attention to this dispicable disregard and the constant brick walls and dead ends we parents are facing all the time. People have wrote books, they've had court cases, they've contacted their local papers, they've been interviewed on television.... and much more... all in attempt to draw attention to this and get something done.....And while all this is going on the help, support and provision is just disappearing and becoming increasingly inaccessable... I know it all sounds like hot air.... and just now it probably is... but watch this space... Women tied themselves to railings and went to prison in their fight for emancipation.... It's time for drastic measures no doubt about that. Lauren Quote Share this post Link to post Share on other sites
annie Report post Posted September 17, 2005 Hi Helen, I supppose that by necessity we tend to be very involved in what is happening to our kids here and now and in the main they are pre-adult. That is so true, when us parents first start out we rather naively assume that our children will be given the the help and support automatically, only to find out very quickly that it just does not happen. The fight for help is exhausting, as posts on this forum alone shows, many, me included end up being given anti-depressents as a crutch for trying to cope. Thankfully, I was only on the tablets for a month or so, but many are on them a lot longer. It's only since my fight with the education lot has finished, that I feel I am strong enough to take on the next load of foreseeable problems. Looking back though, I do regret that I didn't think further ahead. The saying 'it's all down to experience' comes to mind. Chip, chip, Annie X Quote Share this post Link to post Share on other sites
annie Report post Posted September 17, 2005 Carole, Ignore this if you've already seen this, but the IPSEA site was updated this week with this, I thought you would be interested http://www.ipsea.org.uk/edskillscom-enqu-05.htm Annie X Quote Share this post Link to post Share on other sites
annie Report post Posted September 17, 2005 Lauren <'> <'> We had exactly the same thing with school , hence he's not there anymore. Trying, and failing miserably, to get my son's school to recognise his learning difficulties and to stop trying to force him to be 'normal' and to 'act normal'. I could weep and scream even as I type this. I had a meeting with them yesterday where they smiled and rolled their eyes and cited 'adolescence... puberty' as to why my son spent 8 hours being inconsolable and hysterical because he can't cope with the stress at school and as to why my GP was so worried he has told us to not leave him alone at any time (in other words he's on suicide watch). Add to that Alex's old school's SENCO charming comment "All he needs it a kick up the bum". If LEA's are supplying 'special training' on ASD's, just WHAT EXACTLY does this 'special training' consist of 'cos I'm pretty sure that these ideas and comments wouldn't have been on the agenda Annie <'> Quote Share this post Link to post Share on other sites
Flora Report post Posted September 17, 2005 Annie... I hope you don't mind me asking. You said your son's not at that school now, is that because he changed schools or did you keep him at home? I'm going to guage how my son is to decide whether to keep him off until we get this sorted or send him back on Monday... I'll just play it by ear but I'm wondering how you dealt with it? I know the teachers think I'm over reacting (you can just tell by their responses can't you??) but as far as I'm concerned my son's happiness and mental wellbeing are far more important than anything he may or may not learn over the next few weeks. Thanks Lauren x Quote Share this post Link to post Share on other sites
annie Report post Posted September 17, 2005 Lauren, Have PM'd you. Annie Quote Share this post Link to post Share on other sites
nellie Report post Posted September 17, 2005 Carole, This doesn't surprise me. I'm hearing similar all the time. It's like talking to a brick wall!!!! Quote Share this post Link to post Share on other sites
baddad Report post Posted September 17, 2005 Sadly, there's not anything in the original post that surprises me at all. Perhaps I'm just cynical, but the years I spent working in the field were enough to convince me that a) the people making decisions worked with what suited them (and were in a position where careful selection of information and the fact that they held the biggest purse paying for that information worked in their favour) and ignored the rest, and that b ) it all came down to money. I'm also not surprised that only 3 parents showed up Sadly, i think parents of kids with HF ASD or AS are actually the worst for complacency (not the parents on this forum of course), because they often seem to have bought into the idea that their children will some how 'grow out of it', until reality suddenly hits in at about 14-15 when it's a bit too ###### late... Don't know how you address this, but I think the (i.e.) early bird initiative would reject the idea that parents needed to be taught about the 'politics' of disability out of hand (sources of their funding not least among their considerations!), but ALL parents need to be scared for the future if disability support provision is not to go the same way as provision in the mental health and elderly care sectors... Then, once you've got the parents united, you've got to tackle the wider public who've all had years of social engineering to convince them that anyone outside of their own personal networks isn't worth worrying about and doesn't count. Sorry. Soapboxing again... L&P BD Quote Share this post Link to post Share on other sites
nellie Report post Posted September 17, 2005 Yup, I agree with the old fella! There is a possibility that things may improve for our kids in the next decade. It's sad, but I don't see any impovement in provision for adults in my life time. I'm not sure I have the energy or the will to try and move this mountain any more. Quote Share this post Link to post Share on other sites
Zemanski Report post Posted September 17, 2005 Who was it first said that 'AS is a mild form of autism'? this attitude is all down to that one phrase I think - it gives those who want to sideline the needs of AS people the perfecty excuse, if AS is mild then they don't need to prioritise it or even bother with it. there is only one difference in the criteria - no language delay in AS - and professionals already deliberately delay diagnosis of autism until language is in place because they can then give an AS diagnosis. Why do they do this? because AS is 'mild' and autism is not. because they know they have to provide for and an autistic child but do not have to bother with an AS child. Why do LEAs prefer a diagnosis of AS to that of autism? because they do not have to provide special resources for AS because it is 'mild' the argument among professionals as to whether AS is a separate condition from autism is going on for this very reason; many know that this is happening and are worried about the way the needs of AS people are so thoroughly ignored, the professionals who want to do away with AS as a label see beyond the differences to the autism that is the root of both conditions and recognise that both groups need help, support and understanding. The more I learn about AS and autism the more I see AS as simply a different presentation of autism. The more I hear this sort of argument from people in positions of influence and power the more I realise that I want my son's condition recognised as autism. Zemanski Quote Share this post Link to post Share on other sites
helenl53 Report post Posted September 17, 2005 Hi Guys Having read Caroles account of why there was a low turnout of parents is sounding like deja vu to me. Was it not only a few weeks ago when I was saying that the Children and Young Peoples Plan was going into production locally without - you guessed it - input from children, young people and their parents. Like Carole, I only found out about the consultation as I am considered to be in the voluntary sector - although having said that - I did not get a direct invitation and only helard about the consultation from another vountary organisation. When I questioned why I was not listed - I was told that my organisation had made it known that they did not want to be part of the process!!!! Would not like to put down how I think this occurred as Big Brother will probably have me shot!!!!!! As it is a support group of parents and carers of kids with asd/adhd, we really need to have input into future services. My point is though - is it not a bit sinister that parents are being accidentaly left out of consultations or any kind of operation that involves their kids! Love Agent Chipmunk Quote Share this post Link to post Share on other sites
phasmid Report post Posted September 17, 2005 Who was it first said that 'AS is a mild form of autism'? this attitude is all down to that one phrase I think - it gives those who want to sideline the needs of AS people the perfecty excuse, if AS is mild then they don't need to prioritise it or even bother with it. there is only one difference in the criteria - no language delay in AS - and professionals already deliberately delay diagnosis of autism until language is in place because they can then give an AS diagnosis. Why do they do this? because AS is 'mild' and autism is not. because they know they have to provide for and an autistic child but do not have to bother with an AS child. Why do LEAs prefer a diagnosis of AS to that of autism? because they do not have to provide special resources for AS because it is 'mild' Which is exactly why I think that we were denied Phas Jr's diagnosis age 3! The problem a lot of us have is being at the forefront of the AS provision. AS was only recognised in the UK in the last 10-15 yrs. Phas Jr is 15. Figure it out! So if we have to fight to get things in place tehn fight we must. Not just for our kids...but for all those following behind them. For many that fight means business as usual because fight is what we have always done, knacering as it is we must fight on. If the powers that be are getting it wrong we will just have to make the ###### listen!!! Quote Share this post Link to post Share on other sites
Zemanski Report post Posted September 17, 2005 Com is 13 - snap! we are the trail-blazers, all of us here - we have to be because just by fighting for resources and recognition in the here and now we are the first, our children are the guinea pigs. If we don't fight for them then who will? - not those snotty nosed prats in power who think just because they have heard that one small phrase ' AS is a mild form of autism' they know better than us and can dismiss our children out of hand. my lovely advisor friend keeps trying to keep me going with the thought that what we do for Com benefits all those who come after but to be honest I rarely have the energy to think about who comes next; fighting the same battles over and over again is just too draining. is having paralysis from the waist down a mild form of paraplegia? is a cancerous skin growth a milder form of cancer than lung cancer? were the london bombings a milder form of terrorism than the twin towers? (Nemo doesn't think I'm being offensive enough but I won't put in his suggestions - is this a mild form of censorship?) aaaargh! Zemanski Quote Share this post Link to post Share on other sites
annie Report post Posted September 17, 2005 (edited) So correct me if I'm wrong..........Asperger's is a MILD form of Autism........ok..... and people with Asperger's don't need extra support........ok So when my son leaves school next year, he should apply for a job with these people because they obviously think he has no more difficulites than anybody else. and of course they would select him over all other candidates. Yeah, right. Annie X Edited September 17, 2005 by annie Quote Share this post Link to post Share on other sites
Zemanski Report post Posted September 17, 2005 AS is officially and legally a lifelong disability. Quote Share this post Link to post Share on other sites
barefoot wend Report post Posted September 17, 2005 I'm sorry but I join the list of cynics! For 18 months years I sat on an NHS committee studying the reform of camhs in the light of the children's act and Victoria Climbie. I constantly felt that I was banging my head against a brick wall. They talked the talk, had lots of meetings and produced lots of wonderful sounding leaflets - but God forbid you expect any actual help. I constantly wanted to resign with sheer frustration but persevered as I felt that our voices needed to be heard - did anyone listen? No. Eventually, I did resign as I could not comfortably be a part to what was happening. At least they could no longer say they had input from people at the sharp end. I'm sure there are very good people in the system who feel equally frustrated with the way things are - they just aren't the decision-makers. Barefoot Quote Share this post Link to post Share on other sites
annie Report post Posted September 17, 2005 Hi Zemanski, Yes, I know. Sorry for my very cynical last post, but this whole 'Asperger's is a mild form of Autism' view really does make me want to scream. Annie X Quote Share this post Link to post Share on other sites
Canopus Report post Posted September 17, 2005 AS is officially and legally a lifelong disability. My educational psychologist thought she could purge the problems from me by sending me to a residential school so I would be forced to mix with other kids in an environment of hard discipline to stop me misbehaving. Obviously she was wrong and had I been diagnosed with AS then she would have to accept the conditions were incurable and forced integration would get nowhere. Quote Share this post Link to post Share on other sites
call me jaded Report post Posted September 17, 2005 I have speed-read all the responses to this today, but have been thinking about Carole's original post since this morning. So if someone has already said this, forgive me. There has to be a sea-change in provision. What we've got at the moment is label-led and what we should be fighting for is needs-based provision. Because although our child may all have the same label, the individual needs vary enormously. The DRC has made this exact same argument with regard to health provision for the disabled and Carole when I get a moment in this crazy week I will look this out. Feel free to remind me until I find it. Quote Share this post Link to post Share on other sites
oracle Report post Posted September 17, 2005 (edited) deleted Edited October 30, 2006 by oracle Quote Share this post Link to post Share on other sites
Zemanski Report post Posted September 17, 2005 Annie, I join you all in the cynic's camp - I put that just to remind us all that AS is a legal disability just like all the others including autism - there is no mild in there and nor should there be. the powers that be have just as much responsibility to support our disabled kids and adults as they have to support other disabled kids and adults. And yes, it must be needs led - I'm the last to demand resources my child doesn't actually need but I will fight tooth and nail to get what he does need. Quote Share this post Link to post Share on other sites
annie Report post Posted September 17, 2005 Hear, Hear Zemanski Quote Share this post Link to post Share on other sites
helenl53 Report post Posted September 17, 2005 I know that Jacki Jackson may not be everyone's cup of tea, but she made a comment that shook me rigid She said that her youngest (asd) child is in a wheelchair and she was quite pleased that his little legs did not work because it helped people accept him and accept his asd problems. Now I understand that ignorant (meant in the nicest way) people will look at our kids and make inappropriate comments due to their lack of understanding - but it is quite frightening that people who are making decisions regarding our kids are displaying a kind of ignorance that we can not and should not make allowances for. Autism, AS. ASD - are these labels not dreamed up by others to enlighten people. I am with Lucas on these issues - Autism is Autism and there is no mild or severe - just different and it is not for the outside world to decide on severity - severity is not the issue. We need to rally and perhaps lend our support via Campaim as this is already recognised in the lobbying world- Carole is the woman to contact. We also need to systematically chip away at the system in our own neck of the woods. I could be flippant and say that this problem is worldwide and due to global warming - my cousin in law who is a carer for young adults with ASD's phoned today and said there is so much difficulty getting provision met and decisions seem to be made without consultation with the key players (where have I heard that before) and he said that he felt like he was living in a third world dictatorship. Where does he live - a wealthy and progressive country - Australia! Best wishes Helen Quote Share this post Link to post Share on other sites
phasmid Report post Posted September 17, 2005 None of on us here are here by choice. We are all victims of circumstance. It is how we deal with it that counts. Some of us will find ourselves being the first parent in many situations. What we can do, via this board and others, is to help others avoid the pitfalls and traps that caught us out. Just by fighting and winning our battles we train others to win the war! Strength in numbers and victory through knowledge. I think that may be a good signature! Quote Share this post Link to post Share on other sites
Kazzen161 Report post Posted September 17, 2005 I'm going to another consultation about Child Services soon - I couldn't make the last one cos they only invivted parents for the last hour - from 4 -5pm!!! They have not got a clue have they - or perhaps they didn't want any to turn up, so they coudl all go home early? This consultation said it was in my town - so I thought I would make the effort (+ we get dinner provided!) - then the woman said it had been changed to a town half an hours drive away - then she sent me a map of the location - in my town!! Says a lot for the organisation! I have been to so many consultations and they have taken no notice of what we have said. In my experience a lot of parents who attended were of teenaged AS children- worrying about transition and adult services. I am not surprised that SS do not class AS adults as requiring services - ours has never included AS in their children with disabilities service. Karen Quote Share this post Link to post Share on other sites
Kathryn Report post Posted September 17, 2005 I am late to this discussion but transition to adulthood is something which is very much on my minds right now, having a child who is on the verge of adulthood. We have been dogged by this kind of ignorance since our fight for provision began, across the board in health and social services as well as in education. I have talked myself hoarse about autism, and thought I was getting through at last, but even the professionals who ought to know better seem to lack a basic grasp of the condition. It's so demoralising. Quote Share this post Link to post Share on other sites
smallworld Report post Posted September 18, 2005 I'm a day late to this too, I couldn't get my head around this before now. Now, I just think that this chap has his head elsewhere entirely ! More than anything, it's a wake-up call to all us parents of younger asd children. Their future's not that far away. It's difficult to start thinking about your child's teen/adult years when your bogged down in a recent dx or a start at a new school etc.. This forum has been my only source of what it's like to have an older asd child , and the future scares me. Next time I'm invited to something about provision for teens in our area, I'm going ! Thanks Carole, wac P.S. I was once the only one to show up at an earlybird intro, I had 3 different experts to quiz !!! Quote Share this post Link to post Share on other sites
oracle Report post Posted September 18, 2005 (edited) deleted Edited October 30, 2006 by oracle Quote Share this post Link to post Share on other sites
asereht Report post Posted September 18, 2005 (edited) Sometimes I wish I had never heard the word Aspergers and could just say my son had autism. Sorry but so fed up Edited September 18, 2005 by asereht Quote Share this post Link to post Share on other sites
littlenemo Report post Posted September 18, 2005 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 seems to have more impact sometimes Zemanski Quote Share this post Link to post Share on other sites
