why we need to keep fighting autism myths!

[maybelline]

Kathryn Flett on televison, Nov 11 | Review | The Observer

 

sorry you would need to scroll down abit so find 'more idiot than savant' and so on.

[tiredandangry]

Gobsmacking! That is a particularly stupid article written by what appears to be a very lazy journalist. Why is it not OK to write abusive comments on race and religion but perfectly OK to be abusive about the disabled? You'd have thought the Guardian had more sense, obviously not.

[demon_x_slash]

Complaints page for the Guardian Newsgroup. I suggest we all make use of it.

 

(disgusting) Comment in question:

 

 

Which brings me neatly to Joe's Palace (BBC1), the latest from Stephen Poliakoff, a name that long-standing readers of this column will recognise brings me out in a critical rash. As we are midway through a feast of Poliakoff, what with an entire evening on BBC2 last night, plus tomorrow's Capturing Mary, I'm going to keep it brief this week. And you can't imagine how much restraint that requires. Fortunately, I have been able to distil my six pages of scribbled notes/ranting to a pithy overview:

Joe: central character - possibly a bit Asperger's, definitely dull and more idiot than savant. Best not to make your central character autistic unless he's going to be played by Dustin Hoffman. Played instead by newcomer Danny Lee Wynter. Impossible to tell, given the vacuity and dullness of the character, whether young Wynter is a good actor or not.

Joe gets a job looking after yet another big, posh, empty Poliakoff house, this one owned by Michael Gambon's Elliot Graham, a billionaire semi-recluse who lives across the road. People come and go, the dialogue is predictably stagey and stilted, Joe wafts around vacantly, there is some random al fresco dancing. Nothing much happens until Graham hires the girl who sells him cheese and salami in the local deli to go through his papers and find out that his father made his vast fortune with the help of the Nazis. No surprises there, then. After a trip to Bodiam Castle, which Elliot Graham has conveniently donated to the National Trust, perhaps to stop people like me (it's my local castle) shouting: 'That's not his, that's Bodiam!' at the screen, he returns some pricey little ornaments stolen from a Jewish family in the 1930s to their descendants, who live in North Carolina. Which makes him feel much better. Then he sits and eats cheese and salami in the garden with Joe and the girl from the deli, in silence. The end.

[maybelline]

it is my understanding that actually, the character was not written as autistic and certainly not as idiot!

 

some people court controversy to bring attention on themselves !?!?!

[honey5]

definitely dull and more idiot than savan

 

i find it quite humorous to think a child within that spectrum or anyone indeed would be classed as dull and they most certainly arent idiotic for sure

honey x

[Guest ChloeJane]

Interesting thread......

 

It is so hard when Autism is not seen as a real disability and so little help out there.

 

My partner has Aspergas Syndrome. He is 43. They say it is a high level of Autism but is not recognised as a disability. Would like to see them live as I do. Not a thing can be out of routine or place without it causing him major mood swings and an inability to cope. The way he prosesses things so different. Sometimes, I hold patience, other times I feel I fail him for understanding.

 

I am lucky that his work is routine and while constantly tired he manages. There is no allowance to be claimed though as he functions. To try and work full time and manage at home is exhausting for me more than him, ensuring everything is just right, mail on table, no sudden changes, planned everything, meals pre thought, colours considered, home is quiet, no people around unexpectadly. Everything put in a place, clothes the same each day, shoes in boxes, hair cut same time same day each month, lunch made and ensure there is nothing he thinks of other than to wake, dress, drive to work, come home, eat, watch teli and sleep.

 

To get help at times so I can spend a night away, changing the routine...without him fretting and thinking things through a thousand times of what can could and would go wrong thinking out every scenario, I stay home as it is simpler. To leave for a night let alone a few hours, causes an anxiety and panick that so often due to no support, I am forced to not do things I would like to or change plans made of things I would like to do. The myth is he has Autism but functions. Does he? I often think his world expanding with new things appears so frightening to him it is hard to watch him try and cope. He often shakes and when confronted, is like a little boy frustrated and feels stupid, so we avoid discussions on anything that may increase behaviours.

 

My partner to the outside world would be perceived as was described in the article. Though he has skills for memory on certain subjects or the past that is nothing short of amazing for memory. Repetative and forgets things that are not important or conceivable but two topics he repeats and knows so well, I have heard the same stories and facts and still nod and ask questions as if it is the first time he has said them. I used to get so frustrated, now I cope.

 

The myths around Autism and any form of recognition is almost impossible as to the rest of the world they appear to function well. I recently joined a support group for adults with partners and while we all say the same things for no support available, we are told that there is hope and as the myths are broken down more education is out there and in time, the support we need too as adults coping with adults or adults coping with children.

 

It is the silent nightmare for a parent or carer or partner and a frustrating very lonely battle to understand. My behaviours have to adapt, his never can. Myths on Autism have to be fought, or people like my partner as Adults are lost in a real world.

[maybelline]

hello chloejane, I am sorry you are having difficulties but good on you for coping so well with very little support. I imagine you have already tried all the usual websites, NAS and online forums, if not I can give some links, or the nas helpline who might have some new information re support for you and your husband, best wishes, do not lose hope:)

[Guest ChloeJane]

Thankyou Maybelline. Since joining the group we meet once a month close to home. It is sooo nice to just relax and say it how it is and we are looking at raising more awareness for Adults in the Autism spectrum to enable them to continue to cope, by having support not at all times being reliant upon only us as there total survival.

 

Last year the Cambridge University held a fantastic diagnostic unit but sadly with lack of funding it is hard to get in, so found a private practice in London that we are soon going to, to see if medication is a better option now as at various times, of late the behaviours have been nothing short of challenging to say the least.

 

I didn't realise there was a forum? There are some days where I could use the support as not all days here I can keep as stable as he needs. I had so hoped to go to Manchester, but sadly his father fell ill tonight and we are not sure how long he has, so his mother is unable to support him while I was away. So yes, any link to a forum to understand more or have others that know what it is like would be great!!!! does get a bit lonely to say the least.

[Guest ChloeJane]

Maybelline, can I have the forum for Autism please? The address right now would be soooo handy!

 

CJ

[maybelline]

Asperger and ASD UK Online Forum (Powered by Invision Power Board)

 

The National Autistic Society - Home

[maybelline]

AWARES Conference Centre

 

dont know if you are interested in this one, is for information sharing and discussion with experts, not a support forum as such.

[Guest ChloeJane]

You are a gem! x Am pulling my hair out at the moment.

[hepburn07]

Not sure if this is any use to you either ChloeJane, but here's a marriage counsellor who specialises in couples where one partner has a diagnosis (or suspected diagnosis I think) of Aspergers.

 

She's does a "weekend workshop for women who are either in, or have been in, a relationship with an AS partner; who would like to feel both understood and supported".

 

Maxine Aston and Asperger Syndrome

 

Good Luck! :grin:

[Guest ChloeJane]

Thankyou.

 

Going through a hard time of it at the moment as the hospital after a drama last night, have said I have to accept this is as good as it will ever get. I always thought things would somehow get better. Now facing choices. Link came at a good time. Thanks again. CJ

[Bookworm]

It is so hard when Autism is not seen as a real disability and so little help out there.

 

My partner has Aspergas Syndrome. He is 43. They say it is a high level of Autism but is not recognised as a disability.

 

CJ, I don't know who told you that, but it is absolutely not true, AS is a recognised disability, and can qualify for some disability benefits, etc.

 

For you, you might want to have a look here:

The Asperger Marriage Web Site. People with Asperger's Syndrome DO get married!

 

and read this:

 

Amazon.co.uk: An Asperger Marriage: Books: Gisela Slater-Walker,Chris Slater-Walker

 

Take care.

[Guest ChloeJane]

Hi Bookworm,

 

Thanks for the links.

 

My issue is the allowance I can't get. As he is only diagnosed by the Doctor not the psychologist they declined the application.It has taken 11 months to finally get an appointment for assessment. So we are formally assessed in March.(that is if my sanity makes it!) I was told there is no point re applying for the allowance till then?

 

PS. NOT married! We were due to be in August 2006 but I got cold feet as the doctor said I do need to be very sure since the diagnosis he made highlighted the issues faced.

 

PSS. Add all this to the case and at times, I think I am going mad! CAG keeps me saner.

 

HEPBURN - Thankyou! I booked in for the Course for February!! I also joined the Forum.

[Bookworm]

Hun, you don't need to be married to be in a marriage, if you see what I mean. I've been with Mr Bookie for over 20 years, but only married 13. (I always thought he was the way he is because he's a Northerner from an emotionally crippled family, then I started reading about AS and thought "uh-oh", and both DS's Headmistress and the woman who runs the local AS support group have told me that the moment they clapped eyes on him, they thought he was on the spectrum!)

[maybelline]

AWARES Conference Centre :: Papers

 

this is Maxine Aston paper presented to Awares conference 06.

[Guest ChloeJane]

Bookworm that site is amazing!!!!

 

I have just spent the last half an hour reading various bits that has really made me think. To read what you have written is also comforting as at times I often feel very alone managing and I am the one whose behavours have had to change to manage. Some days...I just think...grr....and forget the basics and Christmas is hard as there are lots of things to think through and thats what makes it even worse.

 

Stressful times makes it all worse and I forgot till I read the site, that of late I haven't used eye contact or been clear with my messages with so much going on. Guess I have to remember the basics....even when I am stressed.

 

Thankyou...for the reminder with that site. x

 

P.S Bookworm....sorry it took a while to post as worried due to earlier attack to post back at all....really am grateful to everyone for the links, they have genuinly helped.

 

CJ

[Bookworm]

CJ, it IS hard, I know, and it IS difficult for us to remember. The little one had a really bad day last week, and looking back, I reacted in all the wrong ways, because I was stressed, because I was tired, because I was fed up with always having to control MY temper (not the most serene at best of times, ), because, because, because.... regardless, I forgot, or allowed myself to forget that *I* have to adapt because *he* can't. If I had yielded, a lot of the crisis would have subsided long before. As the result of my own behaviour, I put myself through a far worse day... Talk of an own goal, hey...

 

Basic things to help with your partner, if you haven't considered them: Visual clues? Most AS tend to function better when given lots of visual prompts, and I don't see that an adult AS would react differently. It might sound off to use the PECS system on an adult, but why not? If he was blind, you wouldn't feel odd implementing things to help him with that, so might be worth a try.

 

Remember that xmas is often one of the worse times of the year for an Aspie. All the things which are meant to stimulate and please NT people are likely to cause distress: colours, shining, shimmering, crinkling, ribbons, bows, glinting, smells, noises, music, change of routine, people arriving, leaving, talking loudly, dear lord, think how non-AS people react and imagine the impact on someone who thrives on routine and calm.

 

Also never forget that your Aspie is likely to develop more inappropriate behaviours the more stressed he is, and the least likely will he be able to tell you what the real problem is, so watch out for more unusual tics & behaviours & nit-picking, and take it from there.

 

Don't worry about the attacks, it's all under control. ;-)

[Guest ChloeJane]

Reading your post is sooo comforting. It is his day off today as it is every Tuesday and I feel the anxiety build on the Monday night! Every Tuesday is the same, has been for 2 years!

 

It is amazing how they think and process things. I find that they do not stop processing but in such a different way as they cannot empathise or feel or rationalise things as we do. Thats my frustration. What is important to him is 4 things. I have to juggle everything else that he cannot handle which is life, and sometimes resent his ability to often appear ego centric and only see his own needs and wants totally unable to see mine.

 

I think it is more me trying to juggle everything that gets tired and reacts differently as you have said. You have quoted me perfectly for thoughts and feelings right now. I am using more visual queues during stressful times which makes it simpler but hard work for me. My fridge is covered in sticky notes and looks yellow not white!! Then I am writing everything down in full sentences so there is no confusion where the stickies on the fridge are the short reminders.

 

Is a full time job managing it all and this time of the year.......I have begun to resent christmas totally!

 

Do you find that your OH or son constantly forget that you have said something and then say they don't remember you ever saying it and you start to think you are going mad as you know you said it! Do you find your OH is oblivious to anything outside their own space and things they deem important? Is soooo frustrating. I repeat repeat and repeat things!

 

Bookworm your posts have made me smile and think I am doing ok....albeit some days my patience runs out, I then beat myself up thinking I should have handled a situation differently but glad to know its not just me living as I do. Next year and trying to return to full time work for a Solicitors firm and juggling home...dreading it! If only the allowance was possible would ease things, but till full assesment, juggle juggle juggle...patience patience patience.....?

[antivirus]

 

P.S Bookworm....sorry it took a while to post as worried due to earlier attack to post back at all....really am grateful to everyone for the links, they have genuinly helped.

 

CJ

 

Then you should not have attacked other people on this forum. You had a go @ tomtubby you then continued having a go at tomtubby and then you had a go at recycler. Even though all they were doing was to help people. I cant believe it now that tomtubby is not replying to any of my pms. Could it be that you have managed to have them blocked as well ?

[Bookworm]

Do you find that your OH or son constantly forget that you have said something and then say they don't remember you ever saying it and you start to think you are going mad as you know you said it! Do you find your OH is oblivious to anything outside their own space and things they deem important? Is soooo frustrating. I repeat repeat and repeat things!

Not so much OH, I don't think he's full-blown AS, more like having a heavy touch of it, but yes, it is very much an Aspie thing.

 

They can't process information in one go, it has to be broken down in small manageable chunks. For example, if I were to say to T. "go and pick up your clothes, then put them in the hamper, then bring down the hamper", he would get the clothes, and I would find him later in the bathroom still holding the clothes, incapable of remembering what he was supposed to do next.

I can't tell him what to do next if he is in the middle of putting his shoes on, as he will stop doing the shoes to listen to me and then forget to start again. It's hard, because we of course are used to doing one thing, storing an other and so on.

 

Emotionally, yes, it is very hard. I remember when my sister phoned to tell me our mum had been diagnosed with terminal cancer, me sitting in my chair with tears rolling down my cheeks and the rest of the family around me trying to comfort me, T. pushed forward to get to me, but it was to ask for something for himself, totally oblivious to my distress, my need for support at that point.

 

Remember as well that reading facial expressions and body language is not somethings Aspies do well, and of course, NEVER ask if you bum looks big in this if you don't want to hear the truth and nothing but the truth. ;-)

[maybelline]

so true

 

but if you get stuff into the long term memory it stays forever! :)

[tiredandangry]

Hi All

Not saying this will help others but my child/teenager has been on several social training programmes, Socially Speaking, Time To Talk etc which have helped her tremedously to interact with us and other people and teach her about feelings.

Also her behaviour is particularly bad when she's managed to get hold of artificial coloured sweets. The last bout lasted 2 hours and then left her in tears for another. MSG gives her the giggles. Like many ASD people (I read it was about half) she gets severe constipation, then her behaviour becomes much more autistic. A wheat free diet helps.

To reduce her sensory overload she has used cerum (coloured) lenses. They worked for her, however people were not kind and she chose not to wear them.

 

Hope this is useful.