Aspergers Australia needs to be SHUTDOWN

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This is what you get if you ask for help from the only publically funded Aspergers service in Australia.

A little background : In 2010 I contacted this service to beg for help prior to having a nervous breakdown and almost dying as well as becoming homeless for 8 months I got the same run around then. I was told support people would call and they never did. Nothing has changed for me but I figured I will give them a second chance, but they don't deserve it.

I will see this organisation shut down and have already written to their funding body (although they say they are independent they do receive government funding). In their volunteer ads they say knowledge of aspergers would be an advantage, not essential (!)

Sent: Thursday, 2 June 2011 9:26 AM
To: [email protected]
Subject: Asperger Service Australia: left for dead

This is an enquiry e-mail via http://www.asperger.asn.au/ from:
Cara <[email protected]>

I am 31 years old female aspergers and have a carer. I live in Wagga
in NSW. Everyday I don't want to live anymore. I have no future, no
family because I was abused all my life, no friends, no chance of ever
working or having anything. I have tried to get help and that has just
been more and more abuse. There are no services here. I can't get help
and I need it. If you might be interested please make contact.



Dear Cara

I am sorry to hear that you have no services in Wagga Wagga. I did a
search and found the information below.

I would contact Deb Bewick on 6922 9744 and hopefully she will be able
to help you. In the meantime if you could pass on your best contact
phone number, we can ring you and have a chat.

Kind regards
Stefanie Evans


Launch of Wagga Autism Support Group
Tuesday 14 June 2011
10:00 AM – 12:00 PM
RSVP to Deb Bewick 6922 9744 or [email protected]
Venue:
Wagga Wagga City Council Meeti
Council Civic Centre
Cnr Baylis St & Morrow St
Wagga Wagga 2650
Facilities: Air conditioned, Disabled access, Parking available, Public toilets
General Enquiries:
Deb Bewick
Wagga Autism Support Group
PO Box 5221
Wagga Wagga NSW 2650
Phone: 6922 9744
[email protected]




-----Original Message-----
From: Cara [mailto:[email protected]]

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Karma Geddon <[email protected]> Thu, Jun 2, 2011 at 2:45 PM
To: Stef Evans <[email protected]>
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I have aspergers not autism.



Stef Evans <[email protected]> Thu, Jun 2, 2011 at 2:55 PM
To: Karma Geddon <[email protected]>
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Hi Cara

Yes, I understand, but they would also include Asperger's, since this a
rural support group. If you think they can't help have you contacted ASPECT
in Sydney? I know it maybe too far away, but you could call them.

Forest Ridge Business Park
Building 1, Level 2, 14 Aquatic Drive
Frenchs Forest NSW 2086
02 8977 8300 or 02 8977 8300

Kind regards
Stefanie

- Show quoted text -


Karma Geddon <[email protected]> Thu, Jun 2, 2011 at 9:15 PM
To: Stef Evans <[email protected]>
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Hi Stefanie,

I know that it is the common belief that rural services include
aspergers but in reality they don't, discrimination and even aspergers
hate is common here. I contacted every help service in town before I
had my nervous breakdown last year and begged them to help me and
noone did. I almost died because the services here are no good. I had
a social worker who was meant to help me but they didn't, and all I
can do is complain about it, but that doesn't help me. I have never
had treatment I was abused all my life, sexually and other ways. My
mother should have been charged for carer abuse but noone will
investigate her, not even centrelink. All that I have is my carer and
(I trust this is confidential) we are more or less together, which is
the only happiness that I have. Also I have a dog too. I really want
to improve my life but I believe I can't do that here, I want to make
department of housing transfer me somewhere else. Have a good day.

- Show quoted text -
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Karma Geddon <[email protected]> Sun, Jun 5, 2011 at 3:02 AM
To: Stef Evans <[email protected]>
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Dear Stefanie,

It is my understanding that your service represents itself as being
for people with aspergers and claims to advocate on our behalf.

You have seriously sent me referral to a school that is for kids with
AUTISM aged 4 - 16. What use do you suppose that would be?

I am at the end of my coping ability approaching you for help and I
get dismissed with an urban-centric guess that an autism support
group, obviously run by a parent for other parents of autistic kids,
and a school for autistic kids. I clearly told you I had aspergers.
You clearly claim to be for aspergers. I understand the whole spectrum
thing, believe me it has prevented me my whole life from every getting
anything. What is your agenda here? Are you just another group of
people trying to make the autism spectrum a parent's tradgedy rather
than an individual
s diversity? Something along the line of Autism Speaks? Do you have
Asperger's yourself? I already know that the president is a parent not
an aspie.

I am very interested in your response.

Of course there was no response because why should someone who your service claims to be for be allowed to ask questions?

I am sick of being shoehorned into autistic services which never bother to include aspergers they are always for parents to bemoan getting stuck with an autistic kid. I don't have autism and I don't apologise to anyone for that, as far as I know it only minimalises individual's issues to be spectrumised. Parents need help, autistic kids need help, autistic adults need help, aspergers adults need help. There is a huge range of different needs and issues in that.

The reasons why I believe - increasingly strongly that Aspergers Australia needs to be addressed is because it is creating a referral vacuum. People are sent there regardless of their problem, regardless of their need and AA is not equipped to meet even very basic needs.

I have been researching the supporters, funders and patrons of Aspergers Australia and was happy to find someone who at least has aspergers themselves associated with them http://www.garryburge.com

So I wrote to him :

I have just come across your website and been reading about some of the organisations you are involved with and your experiences. I am a 31 year old female with aspergers who lives in Wagga Wagga in NSW. At the moment I am on a mission to find out why there are no services able to provide me with basic health and support needs. When I contacted Aspergers Australia and explained how I felt I have been left for dead by the experience that I had during a breakdown and homelessness last year I was responded to with an autism support group in Wagga being run by a parent of an autistic child for parents of autistic kids. I was told because they are a rural support group they would include aspergers. They don't. I explained that assumption is common in my experience but not true, that was ignored. I was then told to contact ASPECT a school for autistic kids aged up to 16. I clearly said from the start I was 31 and had aspergers. My experience in having a breakdown was horrific, I was hospitalised several times and seriously attempted to kill myself coming very close with an overdose. Noone helped me. Not that I didnt try to get help. I even had a social worker who was an absolute joke and did nothing. If not for one friend who helped me I would be dead now. It really angers me that places like Aspergers Australia can set themselves up as an authority and the place I am suppossed to go and give out useless information and simply ignore any concerns raised with them about this. I have already written to the Department of Community Services which it says on the AA website provides some funding to ask them why it is the case that my life is being treat ed like a joke that simply doesn't matter (more or less, I can write properly) and sent a copy to the secretary. I cannot cope anymore with being made worthless by other people deciding what I should and shouldn't have. I live in total poverty and terrible health without any hope because I have aspergers not because I haven't tried to do something about it. I see a need for change. I hope that you may consider it a need that you could support.


Dear Cara

Thank you for contacting me. I am currently trying to find ways to provide support and services for adults with Asperger Syndrome. May I suggest that you contact Stefanie Evans from Asperger Services Australia on (07) 3865 2911 or [email protected]

I am currently overseas at present so my response to your email may not be as helpful

Sent from my iPhone

assisted suicide through stupidity

sound typical enough to be true.

I wouldn't expect very much this is a government agency afterall and no matter what country they can take anything simple or complex and make a mess. Isn't there anywhere else you can turn too for assistance?

There is absolutely nowhere for me. So far I have been looking for 18 months, but I never would have had a breakdown last year and ended up completely wrecked if there had been anywhere for me to go then, and there wasn't. It is ludicrous to me that there is one organisation in the entire country that EVERYONE seems to think I should be referred to but they do absolutely nothing.

The two referrals Aspergers Australia gave me - a support group for parents of autistic kids and ASPECT in Sydney have confirmed that the referrals are useless. ASPECT runs a single thing for Aspergers (typical spectrum organisation, their main job is handing out over 5 million in grants the Australian government just gave Autism) and that is a social group in Sydney. So if I am willing to travel 8 hours by train I can be treated like a child and pay myself to go ten pin bowling with a bunch of other people who get nothing else either.

I don't believe that Aspergers Australia are a government agency completely, they are mostly a private enterprise run by Tony Attwood. I am still waiting for a letter back from Community Services department in QLD to find out what funding AA receives.

I just joined the forum today, and found your post here while reading through. I too am in Australia, NSW south coast and it aint much better over here. There is no psychiatrist in my Shire, or anywhere close, closest is Wollongong, I cant drive the trip with bus included IF it shows up is 3 hours each way not including the long walk to his office I cannot do for reasons of phobias in public and panic attacks I cant get there. I did get to him one time when I got a lift and I was not impressed. I found it hard to talk to him and the best he could advise me was to get my drivers licence... yes I am taking medication that says do not operate heavy machinery I am a nervous wreck, and living on a pension and dismal part time wage... sure. I did not bother going back. I saw doctors in Sydney years ago and every one of them said something different so I gave up.

Down where I live... barely any services for mental disabilities of any kind, one I was in got shut down due to funding cuts and I have been on my own ever since. One of my problems is calling people on the phone, and not one service has EVER called me to check on me. I could be dead here for a while and noone would even know till I miss work and boss sends someone around, but its a big place they might not find me. My mother has mental illness and its just the 2 of us living here and we are in desperate need of help. Practical help, home visits, home help, I find it very hard just to get to work. Work dosnt know I have this condition they dont speak english.

I think Australia just sucks when it comes to help for disability of the unseen kind. I sometimes wonder if my life would be easier if I cut my own leg off and was in a wheelchair. Then I might get help... maybe... I wouldnt hold my breath.

Loveandrage said:

***
It really angers me that places like Aspergers Australia can set themselves up as an authority and the place I am suppossed to go and give out useless information and simply ignore any concerns raised with them about this. I have already written to the Department of Community Services which it says on the AA website provides some funding to ask them why it is the case that my life is being treat ed like a joke that simply doesn't matter (more or less, I can write properly) and sent a copy to the secretary. I cannot cope anymore with being made worthless by other people deciding what I should and shouldn't have. I live in total poverty and terrible health without any hope because I have aspergers not because I haven't tried to do something about it. I see a need for change. I hope that you may consider it a need that you could support...
***
and

***
...There is absolutely nowhere for me. So far I have been looking for 18 months, but I never would have had a breakdown last year and ended up completely wrecked if there had been anywhere for me to go then, and there wasn't. It is ludicrous to me that there is one organisation in the entire country that EVERYONE seems to think I should be referred to but they do absolutely nothing.

The two referrals Aspergers Australia gave me - a support group for parents of autistic kids and ASPECT in Sydney have confirmed that the referrals are useless. ASPECT runs a single thing for Aspergers (typical spectrum organisation, their main job is handing out over 5 million in grants the Australian government just gave Autism) and that is a social group in Sydney. So if I am willing to travel 8 hours by train I can be treated like a child and pay myself to go ten pin bowling with a bunch of other people who get nothing else either.

I don't believe that Aspergers Australia are a government agency completely, they are mostly a private enterprise run by Tony Attwood. I am still waiting for a letter back from Community Services department in QLD to find out what funding AA receives.
***

As the man said:
"Except for the names and a few other changes..." you could be talking about Aspire Ireland...who are at least 80% government funded...

*Self appointed to expertise.
*Claim to offer everything.
*Have never been caught doing one single thing to actually help, rather than hinder, an adult on the spectrum since they were founded in the 90s.
*Claim to speak for people on the spectrum at government level without even any pretence of a mandate.
*Ban any adult with AS who does not think and speak as they are told.
*Treat adults with AS as if they were either children, or dirt between their toes depending on degree of compliance.
*Regularly take credit for things they have not done, and even things that have never happened.
*Ran a subsidiary supported employment project that was shut down in 2005/2006 after failing to place ONE SINGLE PERSON in employment in years.
*Just got a brand new grant to waste on not placing anyone in suitable employment again.

I don't know the answer...if I did I would have fixed this by now...but I do know how it feels...how enraging it is to see people like this cold-bloodedly exploiting and preying on our lives, and not even being competant about.

I just wanted to say...there is NOTHING wrong with you, they are the problem here...

I just hope it starts to change before more of our lives get ploughed under.

(Format will not work for "quote" sorry)

The challenge facing autistic adults in the twentieth century is getting autism as an adult disability onto the radar of ordinary people. Autism as something that affects kids has headlines, funding, organisations, ... but at age eighteen the label magically evaporates. This is painfully apparent in Australia, because governments have increasingly funded the childhood disorder in preference to trying to do anything for adults over the last couple of decades. Support organisations have followed the government funding and are now trapped - the same people they've been helping steadily for years are now unfunded adult autistics.

What can we do?

@loveandrage
I hope you do get this organization shut down, they are obviously completely useless. If they aren't there to help people like you then what is the point to them? It sounds to me like you might need services to help you become independent and gain employment, and perhaps help build your confidence. Not a referral for social groups and support groups, especially ones that are for parents of Autistic children and are hundreds of miles away, how are they going to help when you are homeless? utterly pathetic.

Seven years on and very little has changed.
Not just with Asperger's Australia either (who I wrote to with my problems in life and never bothered to respond).

The worst thing is, even if you can commute for hours and stand a full working week in the office, you are very unlikely to get any job. HRs are doing their best to filter out everyone who doesn't fit their procrustean bed of Normality and GoodGuyness perfectly.
It's freaking ironic how the laws that were created to protect the rights of the workers resulted in more abuse.

PS ever tried working remotely? Apparently, this is the only practical way that we have so far.