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

[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

[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.

[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.

[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!

[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]

Originally Posted by ChloeJane

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.

[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.