International AS Year

[oracle]

Tomorrow will see the beginning of International Aspergers Year. To mark that NAS have a page on their site to mark the occasion which they say 'is the first worldwide celebration dedicated solely to Aspergers syndrome'. They also want to hear about personal successes and achievements over the years and how people with AS have learned to live with Aspergers syndrome and overcome certain difficulties.

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=801&a=8936

 

This is a brilliant idea in one sense, because we know that people with AS can and do achieve and overcome things in their lives and we should celebrate these things. As a parent I am asking what if anything I have to celebrate - apart from the fact that I have to beautiful sons that I love dearly? However fighting to gain access to an education which meets their needs and service provision and resources on a daily basis is something that I can not celebrate. I am worried that NAS will publish a wonderful record of achievement at the end of this year, which will once again minimise the condition and the continual battle that parents are fighting for on a daily basis. NAS talk about 'celebrating the lives of those living with AS who are successfully fulfilling their dreams and achieving great things'. How many of us are living with these people? I know many adults with AS who 'survive' on a daily basis - is that success and or fulfilling their dreams?

 

 

Is it just me here? Am I now a bitter and twisted person who can't see the wood for the trees? I am left wondering if now is the hour to give up - because while I agree that we should celebrate the achievements of the AS community it would also be fitting if another page had been set up asking for the difficulties that parents must overcome and how often we actually succeed. That would give a balance would it not?

 

A very fed up Carole

Edited February 17, 2006 by carole

[smiley]

Oh Dear

 

I completely agree with you Carol. It is very important to highlight the achievements of people with AS, BUT we all know these can be few, and far between.

 

What about the battle to get our children the provisions they need to enable them to achieve??

 

What about the daily struggle we face as parent of a child with Aspergers??

 

I hope this isn't used as another reason to label Aspergers 'mild' - as we all know, it can be far from it.

[TuX]

I am not sure how this will help other than to make it harder for our difficulties to be taken seriously because people assume we're all highly intelligent with just a bit of a problem with socialising.

The effects of highlighting the achievements of AS is already prevelent for adults with AS,because it is nearly impossible to get help from people like the social services due to their belief that we all have it mild and are able to manage with everything.

 

I wonder is a specific Aspergers year an attempt at getting AS viewed as a condition of it's own rather than part of Autism?

[justamom]

Carole, I don't think you are bitter and twisted, you made a good point and its very true what you say about "surviving".

 

The NAS should consider other views like our difficulties not just one sided as you say that would be fairer.

 

justamom

[spectrumlady]

Carole, I don't think you are bitter and twisted, you made a good point and its very true what you say about "surviving".

 

The NAS should consider other views like our difficulties not just one sided as you say that would be fairer.

 

justamom

I also agree completely with you Carole ! I am sick of so called "Professionals" saying everything is fine when it is patently obvious that everything is very far from it. I work with parents who continually have to fight every step of the way with people who clearly don't know which end is up !!!! training - don't make me laugh ! nobody can be bothered, especially if they have to pay for it, which is usually the case. People look at the behaviour but never ask "why", they also never think of the continued stress parents are under and how it affects lives on a daily basis. I may be compelled to act if NAS go on about what great progress has been made ! in some respects, possibly, but generally..........................

[Flora]

Carole, I couldn't agree with you more.

 

I looked at the page and the form at the bottom for submitting stories. I want to ask if it's ok to submit stories about the struggles rather than the achievments? Or put it another way, can we submit achievment stories like 'William managed to come off his antidepressants in December, and now sleeps through the night with the help of melatonin'... or 'My son managed to go to school one day this term without having a major melt down before hand'... those are the achievments we are celebrating.

 

Carole, you are not bitter, but if you are, then we all are!! But take it from me, not bitter... just REAL.

 

Lauren

[oracle]

I have thought a great deal about this for a few days now - even before I posted the link. I think that maybe if enough parents made NAS aware of our concerns that at least it would be on record.

 

Could we do an e-letter and then people could mail their signatures?

 

We did with in 2002 and it worked - However we would need quite a lot of support.

 

I don't want to bash my sons - even if I am feeling down at the moment - I love em warts and all and always will but my god how hard do we have to fight to get anything for them?

 

And what is really quite annoying is if you read the following which come from NAS itself then it leaves you asking how many adults with AS really do fulfill their dream

 

People with Autism or Aspergers Syndrome are amongst the most vulnerable and socially excluded in our society. Very few have jobs, live in their own homes or have a choice over who cares for them. This needs to change. People with Autism and Aspergers Syndrome must no longer be marginalized or excluded. 49% of adults with AS are still living at home while 65% of these adults have had no community care assessments and are therefore likely to be unknown to statutory agencies that should be supporting them.

Carole

Edited February 18, 2006 by carole

[smallworld]

I'm in !

 

wac

[smiley]

Me too!

 

Carole - maybe we should send 'em the topic i started yesterday about how having an AS child affects the family................

[Flora]

You can count me in too.

[curra]

I would also sign a letter. My story would certainly be one without "successes and achievements" over the years, quite the opposite!!!

 

Curra

[phasmid]

The NAS do a fantastic job of promoting certain issues and certain aspects of Autistic related issues. However I feel they have forgotten that in their role (either self promoted or publicly percieved) as THE voice on Autistic issues in this country that some issues cannot be dealt with in a nicely-nicely fashion. Sometimes on some issues, education provision being one that springs to my mind(for obvious reasons). To me they are simply not vocal or public enough on this. There cannot be many of us that have not had problems with education in one way or another - either as a parent, pupil/student or, both. Yet, and perhaps it is just me - in which case someone tell me where this can be found and I'll go look - I cannot find them fighting for us over this. If it is being done 'on the quiet' it needs to be re-thought, we need to know and the public need to understand the issues we and our children face on a daily basis are being addressed, for ALL of us. If the NAS need a kick up the bum to make them do this, count me in.

[lorryw]

I will be interested to see if anyone can come forward with a tale of happiness and success. I dont fully understand the point of this. Is it to provide a beacon of hope to all the parents of newly diagnosed AS children?

I really dont know what the NAS is about any more. I feel they have lost their way, with too many fingers in too many pies

I am more than happy to add my name to any list.

Loraine

[LizK]

Interesting points raised. I think a more balanced view would definitely be more appropriate as there are numerous struggles and I bet that even the 'success' stories have encoutnered difficulties and fights along the way. Have only had recent involvement with NAS but find their input and advice for children with AS or HFA is much less encompassing for children furhter dwon the spectrum as if those with AS don't seem to matter so much? MAybe that's just a distorted view I have, dunno.

 

However I do think it is important to focus on positive aspects as well. IRL I know a couple of fmailies with teens with AS whose kids have done well in mainstream school, have found a niche in life and who are happy. My H's cousin has AS and has done well in life so far, maybe not in the way his family wanted but he's achieved what HE'S wanted to which is probably more important. I'm not belittling the experiences of parents who have had more struggles and difficulties with education or home life at all, we are very early on on our journey and who knows how it will go for us. I just think that if there are success stories they should be celebrated without the fear that they will negate the struggles that others go through. MAybe if the sunmissions was titled experiences of AS it would encompass all aspects

 

Lx

[spectrumlady]

Interesting points raised. I think a more balanced view would definitely be more appropriate as there are numerous struggles and I bet that even the 'success' stories have encoutnered difficulties and fights along the way. Have only had recent involvement with NAS but find their input and advice for children with AS or HFA is much less encompassing for children furhter dwon the spectrum as if those with AS don't seem to matter so much? MAybe that's just a distorted view I have, dunno.

 

However I do think it is important to focus on positive aspects as well. IRL I know a couple of fmailies with teens with AS whose kids have done well in mainstream school, have found a niche in life and who are happy. My H's cousin has AS and has done well in life so far, maybe not in the way his family wanted but he's achieved what HE'S wanted to which is probably more important. I'm not belittling the experiences of parents who have had more struggles and difficulties with education or home life at all, we are very early on on our journey and who knows how it will go for us. I just think that if there are success stories they should be celebrated without the fear that they will negate the struggles that others go through. MAybe if the sunmissions was titled experiences of AS it would encompass all aspects

 

Lx

Count me in too on any replies to the NAS. I'm sure some good work and results are all around us, but unfortunately there are probably far more disasters. I agree that success should be celebrated and recognised, but lets keep focused on the reality for the majority.

[oracle]

Someone in my local group just made an excellent point here. She said that we should maybe go from the angle of '

 

Sure we need to celebrate the achievements of those with AS who have overcome their difficulties and fulfilled their dreams - now we need to make sure that more than 4% of our adults can be given the opportunity to do so.

 

I think that this would be an excellent approach.

 

Carole

[spectrumlady]

Someone in my local group just made an excellent point here. She said that we should maybe go from the angle of '

 

Sure we need to celebrate the achievements of those with AS who have overcome their difficulties and fulfilled their dreams - now we need to make sure that more than 4% of our adults can be given the opportunity to do so.

 

I think that this would be an excellent approach.

 

Carole

 

I agree, go for it !!

[Deblegs]

Dear All

 

I do see where you are coming from, but I don't think that the NAS will forget that there are parents who are still struggling with their offspring and that there are people with Asperger Syndrome that do struggle to achieve.

 

I think that we have to arrive at a happy medium. I think that we do need to celebrate the achievements of people with Asperger Syndrome. However, we need to make society realise that just because people with Asperger Syndrome can achieve things in life and be a bit independant, it doesn't mean to say that they won't need any help. Also parents are not always going to be around.

 

I do feel for those of you who are having struggles with your offspring.

 

I have done well in my life, but is all due to my Mum's influence. I do still have difficulties though.

 

From Debbie Hudson

[Canopus]

I wonder is a specific Aspergers year an attempt at getting AS viewed as a condition of it's own rather than part of Autism?

 

I mentioned this last year but was forced to take the line that AS is a varient of autism rather than a condition in its own right.

[call me jaded]

I'm not against a few positive role models, but am concerned it may be a double-edged sword.

 

What about releasing a publication on the same day as NAS's which gives an idea of the daily struggles? If we all kept a diary for a week of everything that happens and collated them I'm sure it would be enlightening.

[oracle]

Jaded that is an excellent idea. I am worried that accentuating the positives will eliminate the negatives - but we should be able to do both. There is no doubt that we should celebrate any success and thats why I have no wish to sound like Scrooge here.

 

The other thing is that during the last five years I have realised that you can go to any paper, publication, MP, or whoever you like and if you are not part of NAS then they are not interested. Again that worries me.

 

If we could go to a paper with a group of parents who are willing to keep a diary and have excerpts taken from them then maybe we would have more success?

 

Carole

[call me jaded]

Wouldn't it be great synchronicity if all the diaries covered the same week? We could put in positives as well as negatives. How long have we got until NAS publish?

 

I would be happy to help collate/edit.

[smiley]

I'd be happy to complete a diary

[DaisyProudfoot]

I can add to the diary if it helps

[oracle]

Jaded - Smiley and Daisy

 

I am going to ring my friend tonight and see if he can find out when NAS publish? If anyone can find out then he can. I also think it is a great idea if we all kept a diary of the same week. I would be up for this and all it would take would be a handful of us.

 

I am really quite excited about this idea I think it is ace

 

Carole

[bid]

Carole <'>

 

Thanks for bringing this to our attention, and I agree with everything you have said (maybe I'm bitter and twisted too!!).

 

I also think that there is another section of the AS community which is largely unrepresented, and that is women with AS. Because women often present differently to men with AS I think there are very many out there who are undiagnosed or misdiagnosed, for whom their life-long struggle is a largely silent, 'hidden' one.

 

Bid

[Kathryn]

I also think that there is another section of the AS community which is largely unrepresented, and that is women with AS. Because women often present differently to men with AS I think there are very many out there who are undiagnosed or misdiagnosed, for whom their life-long struggle is a largely silent, 'hidden' one.

 

Amen to that Bid. And at the risk of getting boring because I've said it so many times, the portrayal of AS males in popular fiction and drama only adds to the popular misconception that AS a male thing or somehow "milder" in girls.

 

I think this is a great idea, Carole, would be happy to contribute and I hope girls/women with ASD will be well represented.

 

K

[call me jaded]

I think this is a great idea, Carole, would be happy to contribute and I hope girls/women with ASD will be well represented.

 

K

 

I was kind of hoping Debs (and others) would do a diary of their week.

[Flora]

bid, I couldn't agree with you more!

 

 

Carole, how many diaries would be enough? I'd be happy to submit something.

Lauren

[oracle]

The patron of our local group is a 'WOMAN' who has AS and is also author Jessica Peers. Jessica is a lovely lady and although she herself has written a book (fulfilling one dream) life is far from easy for her, and fulfilling that dream did not diminish any of the problems that she copes with on a daily basis. She would be the first to admit this. I think that she will also be keen to take a leading role in anything that we decide to do.

 

The one things that the Nationals ask for are parents who are happy to be named. They also say that 4 or 5 would be enough. However if we could prove to them that there are far more than four of five then maybe they will actually sit up and take note So the more of us who are willing the better as it will give a wider picture nationally.

 

I have been unable to speak to Richard tonight (probably because he did tell me that he was away today and I forgot ) But I know that he is home tomorrow so I will speak to him then. I may also ask Virginia Bovell - who is now on the NAS council if she knows anything about their publication date? My gut is telling me that as International AS year runs until next Feb it could well be then? So we would have lots of time to get things together.

 

Carole

[oracle]

Hi Folks

 

The feeling is that the success stories will be drip-fed onto the NAS site during the coming twelve months and that would make sense. Of course this is just the opinion of those I have spoken to and not the word on the street from NAS.

 

So I wondered if perhaps those of us who are willing to do so could keep a diary on the run up to Easter? Why Easter? Well because it?s a change of routine, and while it's not quite Christmas, it does bring about a change in activities at school and things in the shops that are not normally there. Is this naughty? It?s just an idea and I would like to hear when others would be happy to keep a diary.

 

I also think that by Easter we should know if there are indeed going to be any success stories published by NAS. There are also parents in our local group willing to join in so we might have a good few to handover.

 

Carole

[UltraMum]

I'd be happy to keep a diary but J's 'official' diagnosis is HFA so not sure this would help.

 

I'm rather concerned, as you are, about the celebrating achievements giving an unbalanced view.

 

I've attended a 'person centred planning' workshop today and have come away feeling that the medical model of disability and the social model of disability are being slowly superceded by an 'educational' model of disability - based solely on the IQ of the person in question ... we've seen it with the DLA forms, then the 'Valuing People' white paper, where AS and HFA are no longer seen as 'learning' disabilities. Y'day Ofsted, in their newsletter are getting their inspectors to refer to LDD's rather than SEN - Learning Difficulties/Disabilities - I generally feel that this is a financially led drive to remove our vulnerable HFA/AS children and adults out of the 'net' for access to education/social services thereby reducing the financial cost for local/national government.

 

Rant over

Edited February 25, 2006 by MotherEve

[redberry]

I will be interested to see if anyone can come forward with a tale of happiness and success. I dont fully understand the point of this. Is it to provide a beacon of hope to all the parents of newly diagnosed AS children?

I really dont know what the NAS is about any more. I feel they have lost their way, with too many fingers in too many pies

I am more than happy to add my name to any list.

Loraine

 

I am above mentioned parent of newly diagnosed child.

 

I think the NAS beacon of hope (if thats what it is ) has a light that doesnt shine so brightly.

 

Im in!

redberry

[Malika]

Hi to all <'>

 

I have just caught up with this thread, about the NAS I remember that when (after seeing one of their awarness poster) I realised that what was wrong with H was very likely "autism" this was around February 2002 I called the NAS and explain that I suspected H had some form of autism they were quite nice and sent me plenty documentation.

 

However when I was struggling with the school and call them they told me that I should call another extension and when I called there I had a machine asking me to leave a message which I did, eventualy I talked to them and mainly they say that there is not a lot they could do to help me and advised me to contact parent partnership. I felt very disapointed and felt that regarding education and probably DLA help was not avalaible probably because of government pressure through allocation of fund.

 

As for Success stories I do not know any..... as far as I am concern it is just propaganda .... but may be it is just because H is DX with ASD not AS..............

 

Anyway if there is something I can do I would be very happy to help.

 

Malika.