Why are Aspergers sufferers universally considered beneath contempt?

[smileyK]

I can really get where you coming from GC I'm in similar situation and can totally relate to you you NOT alone!!! Even though you feel it right now! It dark place be in do you suffer with depression? Have you been to the doctors discussed options like therapies medications?

[Gutcruncher_]

I've been struggling since 2000 there's no help, even when we didn't have a Tory government dismantling the welfare state

[Mike_GX101]

Then stop being so negative about everything!

Why should I lie and be delusional and claim everything is OK when it's not?

 

It's a case of perception. Reframe your mind. See what you don't want to see. See that there is help out there but only if you let it in. You put walls around yourself all the time and you're taking pokes at others and it isn't funny. Doing that is not going to help you and will make you enemies. Don't isolate yourself like that and getting political certainly doesn't help either.

 

I can see this subject is particularly emotive for you and I'm sure you've waited ages for a chance like this - to get it all out. And this is good. But now you need to ease off the throttle a bit and let the help come your way.

Edited August 29, 2012 by Mike_GX101

[smileyK]

It can be long scary nightmare that seems never going wake up that goes on forever! That be hard to accept! I have tried my hardest all my life gave everything effort get so tired / drained of fighting / battling with AS then added to situation of lack of service support input!

[Gutcruncher_]

It can be long scary nightmare that seems never going wake up that goes on forever!

You 'get' it.

[smileyK]

Yes I do I find being trapped with feeling no one really wants to " really know" how you coping with life how you are cold and harsh still can't get used to that fact! I find like a maze trying find way out answer but can't on your own you need support do this effectively! I can get your frustration, anger/bitterness against the world service support out there make out they there when really doing naff all even when you open to letting them in trusting them which for us is such brave thing to do!

[smileyK]

You just want to scream loud at world I'm not o.k I'm not coping I need help now makes feel like going mad crazy than already feel !

[Special_talent123]

Gutcruncher it is not just you that is going through the problem. I have disabilities along with mental health and I am not getitng the help i need for mental health and if the case conference isnt a yes to reassessment gonna be in a massive problem and not get any help. I dont have social worker that is because the funding has been cut and it is not only accepting substantial/critical needs. I have a nurse but they preventing help for me with the wrong diagnosis of BPD

[smileyK]

It's like mirroring me how I feel what I say about services support feel failures me so Many times over when ive needed them bad feel no one hears my cries for help so then surprised ends up more wacky extreme crazy madness

[Mike_GX101]

I bet if you printed off some of what you type here on these forums and put a covering letter together and sent it in they would see the pain that we can all empathise with, some more than others. We've all been there and some of us have been there alone but you guys are not alone. You have this excellent forum in which to communicate and share ideas for support and understanding and that means a lot. You should all be proud that you have such an excellent resource at your fingertips.

[smileyK]

We are grateful for this forum i don't mean sound ungrateful though hope it don't hope you get what I mean and you understand ! isn't the same compared to real service support input that you feel need and entitled too rightfully! You just what someone to listen seriously!

[smileyK]

You feel need consistent reliable source of support which you can trust and know be there no matter what happens but worked out in my own head dont work out that way no matter how much you want need be that way! Lack of support services being passed from pillar to post just adds to confusion frustration turmoil heartache pain which so doesn't help matters has reduced me to tears sobbing my heart out asking why no one wants to know unless I make first move tell them first what's going on what's happening as they don't seem to know themselves !!!

[Lyndalou]

The title of the thread is Why are Aspergers sufferers beneath contempt?

 

First of all, I don't believe this to be the case. Yes, there is a lot of misunderstanding about the condition within the general population and amongst the medical profession. Yes, the services are truly lacking. Yes, things need to really improve. However, this can be said of many different conditions and illnesses and the misconceptions and stereotypes that surrounds disability in it's many forms. No, that doesn't make it right but it does not mean that those with Aspergers are 'beneath contempt'.

 

Secondly, I understand you are very frustrated and that comes across loud and clear but you don't say WHAT help you need. What are you asking various organisations to do? Organisations tend to have specific remits and frustrating as that may be, if you do not fit into that specific remit then they won't be able to provide you with assistance. There is no point going back banging on the same doors repeatedly if they are unable to help. If you are the same Gutcruncher who posted some time back then I warrant a guess that you are looking for assistance to gain employment. Therefore, if you have approached organisations and they have said that they are unable to help you with this then I would suggest that continuing to approach them is a fruitless exercise.

 

Thirdly, I'm sorry if this seems harsh but if you become very angry in real life (even if you feel justified to do so and might actually BE justified to do so) it is a simple fact of life that the person you are aiming that anger at will be less inclined to want to help you. Although you didn't like what Mike said, there are organisations out there who provide help but sometimes in order to receive help it may require compromise on your part to temper certain attitudes or expectations. I think this also applies on this forum but I am concerned to see Smiley egging you on. Just because she is going through a hard time, that doesn't mean that everything you are saying is so.

 

Lynda

[smileyK]

lynda - it may seem like i am 'egging' him on as you put it but i'm not trying stir anything up just trying to make same point as GC that i agree with most of what he had commented on that's all my personal opinion i just wish more people listen openly to our POV's and not judge i mean support service wise as sometimes jump conclusions before finding out what's going on they've dismissed your situation already as to them your on their list that is it plain and simple!

 

XKLX

[Gutcruncher_]

Thirdly, I'm sorry if this seems harsh but if you become very angry in real life (even if you feel justified to do so and might actually BE justified to do so) it is a simple fact of life that the person you are aiming that anger at will be less inclined to want to help you. Although you didn't like what Mike said, there are organisations out there who provide help but sometimes in order to receive help it may require compromise on your part to temper certain attitudes or expectations.

You're making callous assumptions - I have NEVER been offered support then turned it down as unworthy, basically I've NEVER been offered support to "compromise" with. If organisation say, you need to pay this amount before we'll help, and I CAN'T AFFORD IT, that doesn't mean I haven't "comprised", that means I can't afford it!! If something is hours away in Dorchester and I have no transport and no means of affording getting there, I can't get there! I can never get a driving licence!

[Special_talent123]

u say that but there is a bus that goes to weymouth and i get on it for free.

[trekster]

i have some idea why you are feeling this was gutcruncher.

 

After 7 years of fighting i have secured a social worker long term. i think it is because of my CPTSD history and the difficult (to say the least) situation with my mum.

 

There is a postcode lottery regarding services. You have done the right thing by going to your MP. Who is better than your MP? i would recommend contacting Dr Liam Fox www.theyworkforyou.com i think is the site. If you can join in your councils Autism Strategy. NAS has some excellent resources on their site (i realise you have reservations about them).

 

The problem with the ignorance of society is that it feels a lot of autistic behaviour is malicious or any negative stereotype you can put on an autistic (ive heard them all from my mum). i wish people would ask me what i mean or why i did xyz behaviour, it would prompt me to show an autism alert card or explain i get directions and names muddled due to dyslexia.

 

Things that have helped me include;

 

1, going to college or education or volunteering work that suits your interests, if you can do something academic and get the psychological tests to show what your needs are, these can then be used to access social services

 

2, attending autism adult social groups and networking with them, they can tell me what works for them and i can decide whether to try it or not.

 

3, meeting other like minded autistics

 

4, attending autscape once a year http://www.autscape.org/

 

5, music, i play the music that suits my mood

 

6, downloading NAS reports (some are done with autistic input and are excellent)

http://www.sacramentoasis.com/docs/8-22-03/taking_responsibility.pdf

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113369

 

HTH

 

Alexis

[trekster]

You're making callous assumptions - I have NEVER been offered support then turned it down as unworthy, basically I've NEVER been offered support to "compromise" with. If organisation say, you need to pay this amount before we'll help, and I CAN'T AFFORD IT, that doesn't mean I haven't "comprised", that means I can't afford it!! If something is hours away in Dorchester and I have no transport and no means of affording getting there, I can't get there! I can never get a driving licence!

 

You can appeal if you disagree with the amount to pay. i plan to do this with my personalised budget.

 

http://www.autism.org.uk/24618

 

Also try emailing Carly Hinton ( Carly.Hinton@nas.org.uk )

(i was a member of a project that wrote out the myths and truths of the personalised budgets system.)

 

In some counties you can get a bus pass on the grounds of autism. Your GP could write a letter

(paying £15 for a doctors note and a bus pass sounds reasonable to me).

 

Are you on DLA? www.benefitsandwork.co.uk is an excellent website that can help with wording the

forms. i realise it is difficult and you feel isolated. ( Andrew.Powell@nas.org.uk ) has done courses

and projects on how to reduce isolation.

 

If you wish to PM me your situation feel free and hopefully we can find a solution together.

[Gutcruncher_]

u say that but there is a bus that goes to weymouth and i get on it for free.

Weymouth is an enormous distance from me, two hours by train I can't afford that and have no one willing to take me, I don't live in that area.... WAS are trying to avoid helping me by shifting goalposts

 

EDIT: sorry don't mean to reply 'badly', basically you have to realise I don't live in that geographical area.

Edited August 30, 2012 by Gutcruncher_

[trekster]

It's a case of perception. Reframe your mind. See what you don't want to see. See that there is help out there but only if you let it in. You put walls around yourself all the time and you're taking pokes at others and it isn't funny. Doing that is not going to help you and will make you enemies. Don't isolate yourself like that and getting political certainly doesn't help either.

 

I can see this subject is particularly emotive for you and I'm sure you've waited ages for a chance like this - to get it all out. And this is good. But now you need to ease off the throttle a bit and let the help come your way.

 

With regards to helping yourself i found researching autism and trying the methods the literature used helpful.

There are also some social stories and social skills workbooks and DVDs around. In 2003 i was heading for a breakdown

eating 5 packets of sandwiches per day and struggling at university. i was also having major hour long meltdowns over the

TV (i still get upset regarding the demands to switch over but better than before) and my life was just rock bottom.

 

i went off gluten and dairy, then off msg, aspartame and benzoates. My life was turned around within a few months, i could

think clearer and retain information, my stomach issues went and my balance and co ordination improved. i was getting nowhere

with services and had to prove to them that i could meet them 1/2 way.

 

Going off my food addictions also meant my pain and other hidden health issues eg vitamin D3 deficiency which can cause depression including angry or 'permanently (expletive) off depression'. Magnesium can help with muscle pain, omega 3s within

12 weeks (preferably gluten and dairy free) can really help with depression.

 

i have been angry at the world and it just got me nowhere, 'stuck in the middle and i couldnt get out of it' as the U2 song would say.

Really hope my comments have been helpful, finding a direction in life is really difficult.

[Gutcruncher_]

There is a postcode lottery regarding services. You have done the right thing by going to your MP. Who is better than your MP? i would recommend contacting Dr Liam Fox www.theyworkforyou.com i think is the site.

Fox isn't my MP so I won't get a reply, and will be just as bad as my MP, as after all he is a Tory MP.

 

1, going to college or education or volunteering work that suits your interests, if you can do something academic and get the psychological tests to show what your needs are, these can then be used to access social services

I WANT to do more learning but CAN'T AFFORD IT. There is no "free" courses, I have no means of affording courses. Most likely they would turn me away even if I could pay. I wasn't allowed to do A-levels until I was 19! No one wanted me to do A-levels! I even have the required GCSE passes at 16. I had a tutor at university who wouldn't let me into his seminars because I was "special needs"! But main issue, can't afford any more education!! I want to do a Master degree for example, never will be able to afford it.

 

2, attending autism adult social groups and networking with them, they can tell me what works for them and i can decide whether to try it or not.

 

3, meeting other like minded autistics

Horrible, HORRIBLE when I tried one meeting group. They were all pushy middle class parents, no empathy, my Tarquin did this this and that, then you can (ignoring I don't have money or same class situation)! It's lek a part of their brain is missing,I have different circumstances/situations, they don't understand that, the wealthy often don't. I feel MUCH BETTER not trying to meet other 'aspies', that set me back quite a bit. I wasn't listened to, I was treated like dirt, which was the opposite of what I expected.

 

4, attending autscape once a year http://www.autscape.org/

Nowhere near me, I don't travel well!!! I don't want to mix with other 'aspies' in person. Not because I dislike 'aspies' just because of my bad experience before, and I realise the 'label' is so bad, I have to avoid it.

[Gutcruncher_]

You can appeal if you disagree with the amount to pay. i plan to do this with my personalised budget.

 

http://www.autism.org.uk/24618

 

Also try emailing Carly Hinton ( Carly.Hinton@nas.org.uk )

(i was a member of a project that wrote out the myths and truths of the personalised budgets system.)

I don't think you realise, I never got as far as getting a social worker let alone personal budgets.

 

Are you on DLA? www.benefitsandwork.co.uk is an excellent website that can help with wording the

forms. i realise it is difficult and you feel isolated. ( Andrew.Powell@nas.org.uk ) has done courses

and projects on how to reduce isolation.

Applied for DLA but rejected. Went to CAB for help with form. They put down 'personality disorder' on list as my condition instead of Aspergers, they said it was the same thing!!? (WTF?!). I was rejected.

 

I do have a diagnosis of Aspergers, but never had ANY help off the NHS, the help and diagnosis was private, and NO, I can't afford private help.

 

There was a charity that did specialised help with DLA etc claims for people with disabilities, but they got closed down two years ago Wessex Autistic Society has never wanted to know.

 

Not worth contacting NAS, they are a SHAM organisation, absolutely don't care at all, 12, nearly 13, years has proven that to me.

 

EDIT: I don't want to sound "bad", it's just I'm being sugggested things I have tried before, often may times, getting nowhere. I have PMed you a question.

Edited August 30, 2012 by Gutcruncher_

[Special_talent123]

I was trying to say that there is a bus from poole that goes dorchester way its the jurassic coast bus and i get on that for free if you have a bus pass?

[Special_talent123]

well WAS helped me fill out my benefit form. Free courses, have u tried adult learning they do skills for life english and maths and there are courses where u can get LSF which i got for my computer course.

[trekster]

i am trying to help you please avoid using '!' marks, i am also autistic and misunderstood by the system. The NHS has refused to help me with my additional needs in relation to my autism. i have had to fight long and hard since 1996 for the help that i now receive. i am hoping i can help you as well, please let me help you, i care about autistics that have nothing, i have been there. i would appreciate you reading the links i have sent before replying as your replies dont make sense ie can be answered by reading the links.

 

i didn't have a social worker when i was assessed for a 'personalised budget'. The system changed and i lost my social worker.

Have you had a community care assessment? (That is the subject of my dissertation btw)

 

http://www.autism.org.uk/living-with-autism/benefits-and-community-care/care-and-benefits-for-adults-with-an-asd/self-directed-support/how-do-i-get-a-personal-budget.aspx

 

My family contacted Liam Fox sometime ago and he really understood and helped us. He has been a doctor working with PTSD survivors and so understands what I have been through. He got me counselling when i was climbing the walls. Use the hyperlink to find your local MP, or find the nearest autism specific MP, http://www.appga.org.uk/ He isn't my local MP and no i also didn't vote Tory i am going to loose my home due to this recession and i am living in temporary accommodation since May 2012.

 

Have you used the www.benefitsandwork.co.uk guides to claim DLA and ESA? if you wish we could PM each other and try applying again. It really matters how to work the applications. After 3 attempts at DLA i helped a friend of mine get lower rate for both and another friend get theirs increased to middle rate. i am on the old incap system and dreading the date of my ESA assessment which is rumoured to be around 2015. I have also had problems with the CAB.

 

I used the 'taking responsibility' report that I linked you in and wrote about all the possible 'practical support services'. Sometimes a word prompt can help us remember what we need.

 

i know what you mean re the free courses. The tutor was disgusting re your 'special needs' and should have referred you onto student support. i did what i could to stay friends with the disability department so i could have a support worker in class with me. It was all approved via DSA which you can get regardless of which benefits you are on.

 

http://www.direct.gov.uk/en/DisabledPeople/EducationAndTraining/HigherEducation/DG_10034898

 

Totally agree with you there, in the USA aspergers might be a personality disorder but not here. i have just failed my postgraduate university degree and i am devastated. i was hoping for something more in autism.

 

You havent replied re the volunteering work, is that an option for you?

 

Some parents feel threatened by autistics attending their groups for some weird reason? I was talking about autism only groups. Ie adult autistics hanging out with each other, whether that be pub, cinema, cafe or some other outing. Also there are autism only forums such as Aspie village where you can meet other aspies. It is unfortunate that they treated you badly, wasnt there a facilitator making sure that aspergers were polite to you? (i prefer to use aspergers for the negative sense of the word ie bullies and aspies for the positive sense. i can understand your apprehension. i have been threatened by autistics and ive also been bullied by NTs.

 

By 'like minded' i meant those with similiar goals and aspirations to you, eg ST and I do talks for autism awareness in different parts of the country, we share that interest and enjoy discussing it with each other therefore we are like minded.

 

There are 'positive aspects to my asperger syndrome' ive written about them using my professional name. Also autscape varies in location, it is organised for and by autistics and also you can wear a red badge to tell others to 'leave me alone avoid speaking or interacting with me'. There is a chat list as well which i can PM you the details if you wish to ask on there? Autscape chat members are there to find out about autscape and some of them dont come.

 

Considering you aren't working or claiming DLA i realise you cant afford private help. Have you searched for other local charities to help with DLA forms? i might be able to help you via PMs.

 

There are a few good people in the NAS, i wouldn't give out email addresses unless i had personal positive experience of them.

i think you will find that the NAS have written a variety of reports over the past 12 years which i gave links to in previous emails.

Also i have been involved with local training in the Pan Avon area on a variety of subjects. NAS local branches are separate to

the organisation, they get very little funding and the staff are expected to do quite a bit of volunteering, i know i am 1, the secretary

of the North Somerset branch. Yes i have had difficult experiences with certain staff members of NAS but i have also had positive

experiences with others. Patrick Simms for example and his self advocacy book project;

 

http://www.autism.org.uk/products/core-nas-publications/self-advocacy-booklet.aspx

(that is free btw and was edited by autistics, i know i was one of them)

 

The NAS has excellent resources on it's website;

 

http://www.autism.org.uk/living-with-autism/adults-with-autism-or-asperger-syndrome/useful-resources.aspx

 

HTH

 

Alexis

[Gutcruncher_]

i know what you mean re the free courses. The tutor was disgusting re your 'special needs' and should have referred you onto student support. i did what i could to stay friends with the disability department so i could have a support worker in class with me. It was all approved via DSA which you can get regardless of which benefits you are on.

What I mean is that I can't get more education, as there are no 'free' courses. I would need 'free' education as I do not have the means to pay anything. I don't have thousands of pounds for an education course. I wouldn't be upset and asking stuff here if I was, I would have a purpose then.

 

At university I was told to , put up or shut up (those words), go to another university if it was so bad, etc. As that would be financially disastrous as I'd have to start a degree from scratch, I couldn't. I had to keep going or not have a degree. I kept going. I had stuff said at me all the time that would've lost people their jobs if it had been 'racial' or homophobic, but attacking 'aspies' and people with disabilities in general seems fair game to mainstream society.

 

You havent replied re the volunteering work, is that an option for you?

I want to do PAID work. There's no point working otherwise. Voluntary work is exploitative. You don't get paid, you will be out of pocket, you'll never get paid. If someone white said to a black person, you're biologically inferior, you must work for nothing, that is (rightly) considered BAD universally. I am NOT worthless, I am not going to work for nothing.

 

Considering you aren't working or claiming DLA i realise you cant afford private help. Have you searched for other local charities to help with DLA forms? i might be able to help you via PMs.

Yeah, I mentioned it, it was closed down in 2010, there's nothing now. I have tried.

 

What I was saying about personality disorder was that CAB person put that on my DLA form, not Aspergers, and they told me it was the same thing.

[Gutcruncher_]

well WAS helped me fill out my benefit form. Free courses, have u tried adult learning they do skills for life english and maths and there are courses where u can get LSF which i got for my computer course.

WAS never have wanted to help me with forms You must be lucky, Do you get a care package to pay for help from them? They want more money than I could possibly supply with a normal job.

 

I can't get 'skills for life' courses, too basic, you only get free courses if you have lower than GCSE qualifications.

[Special_talent123]

I dont have a care package through them, but i know they do it for free . are you bournemouth or poole area because u can ring them up find out what courses, tell them your sustantces u maybe to come to agreement such as learning support fund which u would not have to pay for if u get it, and also it can cover travel expenses? they also have things on getting into work for free too. I found the adult learning courses better than colleges- there more understanding and accepting and can put in extra support. I had extra support if u write that on application form. http://www.boroughofpoole.com/skillsandlearning/

[Special_talent123]

I do volunteer work in the disability field... you could even try bournemouth people first ? by the way u can get advocate there is one in lower parkstone called advocacy for you

[Suze]

Gutcruncher ...........have you read or noticed the posts I have made and moderated on this thread.I have deleted 2 posts already and edited another.Please refrain from using offensive language, several members have reported this topic already .If the manner in which you conduct yourself on the forum is anything like you are personally I,m not surprised no one wants to offer you any assistance.Several members have gone out of their way to reply to you on here and offer and advice and encouragement and you reply in a disdainful manner.Don,t club all autistics /aspies (whatever term you like )...under your umbrella...."beneath contempt," you undermine every single one of them who has strived to pursue their goals , my son included, who incidentally does volunteer work because he enjoys it and it will help him gain employment after he finishes agricultural college.If you think my son had it easy your wrong on that score , but I won,t bore you with that , it won,t be what you want to hear .

[A-S warrior]

i heard what you said about me,

 

have fun being blocked!

 

and just for the record, your a total jackass.

Edited August 30, 2012 by A-S warrior

[Gutcruncher_]

Gutcruncher ...........have you read or noticed the posts I have made and moderated on this thread.I have deleted 2 posts already and edited another.Please refrain from using offensive language, several members have reported this topic already .If the manner in which you conduct yourself on the forum is anything like you are personally I,m not surprised no one wants to offer you any assistance.

Victim blaming!!! Stop being disablist! You are anti-'aspie' not me. You know NOTHING or what I am like or my circumstances are. I get turned away for mentioning Aspergers which is a toxic label to most of these organisations. I times I've seen and heard the look of disgust for even mentioning Aspergers is many, many many. At one employment/recruitment agency I went to years ago, I heard Aspergers sufferers compared to sex offenders and drug addict, "we don't want people like you, our client businesses certainly don't", all because I mentioned having something that is not imaginary or feigned but real. I was blocked from starting A-levels twice, had to take a university course fouth on my list despite having required A-levels because 'special needs' is bad bad bad, keep away, bad.

 

Several members have gone out of their way to reply to you on here and offer and advice and encouragement and you reply in a disdainful manner.Don,t club all autistics /aspies (whatever term you like )...under your umbrella...."beneath contempt," you undermine every single one of them who has strived to pursue their goals , my son included, who incidentally does volunteer work because he enjoys it and it will help him gain employment after he finishes agricultural college.If you think my son had it easy your wrong on that score , but I won,t bore you with that , it won,t be what you want to hear .

I don;t like a cosy middle-class cosseted lifestyle with parents doing everything for me. I have to struggle but get nowhere, I dont live a sheltered life, middle class people believe the lies about equality of opportunity because they are the elite and get it easy.

 

I am NOT AND NEVER doing voluntary work I need to HAVE MONEY, I CAN'T SURVIVE WITHOUT MONEY!!!!!!!!

[Gutcruncher_]

I CAN'T SURVIVE WITHOUT MONEY!!! US ASPIES ARE WORTH BEING PAID WE AREN'T SUBHUMAN AND INFERIOR!!!

[robert7111a]

Gutcruncher

 

May I make a quiet suggestion?

 

Clearly you are very angry and have reason to be so, but please do not take your anger out on the people on this forum that are trying to help you. It would appear from your capitalised posts that you might have an anger management problem. If you go on shouting at members of this group, you will upset everyone and risk being banned.

 

When I was at school, Aspergers wasn't even heard of so I never knew I had it until more recently. These days, there is lots of help if you research the right places. Shouting and venting your frustration at people/professionals will only alienate them and they will not want to help you.

 

Perhaps you should look at your anger issues first before anything else.

 

Just a suggestion

[Gutcruncher_]

You don't know what you're on about! You're making up stuff to stick the knife in my back. There is NO HELP. Not from social services, not from anywhere I have no money!!

[robert7111a]

You have just proved my point

 

You clearly do not want to do anything to seek help/help yourself

 

Therefore I have nothing else to say to you

[Special_talent123]

I am no longer replying to your posts- you are bashing everyones replies and your plain rude. This is not the first you have done this before. Everyone gives u advice but then u dont want to take it.... i think your just doing it for peoples attentions. So no attention is going to be made whatsoever by me.