Jump to content
Dartman

Worries for the future (portrayal of Autism in the UK)

Recommended Posts

This might be a bit critical - please be aware that what I've written is my opinion, and it wasn't intended to offend anyone.

 

Anyway, what I'm worried about is that in the future, people with Aspergers' Syndrome, autism and other similar conditions will be viewed in a similar way to the views that some charities (for example, the National Autistic Society) try to portray people with ASDs as - people who are needy. Too needy.

 

However, after reading Scapegoat by Katherine Quarmby, my views have deteriorated - in her book, she pointed out a strong link between austerity and the lack of generosity expressed by the general public.

 

Because people with ASDs (even weak ASD conditions) often have problems getting into work, and problems at work, they could be viewed as 'inferior', mainly because their behaviour is 'strange', but also the fact that they (and myself, for example) need more support at work and in life. Because of their increased support needs, the general public may feel that people with ASDs are getting 'something for nothing' - for example, help to get on the employment ladder without making visable sacrifices themselves, such as improving their behaviour.

 

The reason I mention 'something for nothing' is that it is a line walked by the Government - senior Tory ministers have used it, including David Cameron.

 

Anyway, rant over. I just wondered if anyone else feels the way I feel (I also feel that free speech is being eroded in this country - yes, online RIP trolls need to be censored, but not the 59.9 million or so people in the UK who have decent, honest opinions)

Edited by Dartman

Share this post


Link to post
Share on other sites

That's why the NAS and many other ASD related organizations are dedicated to changing perceptions of people on the spectrum.

But what are the NAS doing exactly to do this? A little over a year ago - before I was diagnosed with AS - I had never heard of the NAS!!

 

And even now I have heard of them, I still haven't seen anything "out there" in the real world - not without actively looking for it anyway!!!

Share this post


Link to post
Share on other sites

You either believe that the haves should look after the have nots, that the able should look after the non able, or that it should be every one for themselves. We as a society swing between these to points, At the present time me are heading for the latter.

Share this post


Link to post
Share on other sites

i dont mind if people employ me because the feel i need the job or because im the best person for the job.

i dont know what you mean by too needy? i need a lot of help in accessing my community partly because

of my ASD disability and party due to my EDS and other disabilities. i dont see disability in a negative sense.

 

A while ago the NAS magazines did depict us as less independent than we can be but understanding of

ASD (particularly the so called higher functioning ones) has generally increased.

 

The housing scheme im in is for learning disabled folk. However it means i am less able to find work because

of the monetary situation i end up being in.

 

With regards to the media if they put 'autistic malice type' with each autistic reported for criminal behaviour

that would distinguish the bad autistics from the good ones.

 

The NAS local branches get no funding for wages of the volunteers or expenses to hold the branch meetings

or branch events. The NAS' website does have a 'look for support in your area' section.

 

i dont understand what you mean by 'there isn't anything unless i look for it' for any disability you have to look

for it in order to find charities or other organisations that support people with that disability.

Share this post


Link to post
Share on other sites

i dont understand what you mean by 'there isn't anything unless i look for it' for any disability you have to look

for it in order to find charities or other organisations that support people with that disability.

I mean that I have seen campaigns/leaflets/programmes/adverts/web based links over the years for other services (mental health, learning disability etc) and I have seen things for understanding conditions such as (tourettes, manic depression/bipolar, schizophrenia etc) and other medical conditions (heart attack/stroke, MS, ME/CFS, Alzheimer's etc). Despite not actively looking for them.

 

But I didn't see any similar thing regarding the NAS prior to my dx.

Share this post


Link to post
Share on other sites

Sounds like the NAS either has a lower priority on those sorts of campaigns or has a lower budget for advertising.

Share this post


Link to post
Share on other sites

I would say I am anything but "needy" but I would say that if I paid in, then payout when I need it.

 

When I have mentioned Aspergers to people that I know I have got a blank look. I have then explained that it is HFA and you can see that they have only registered the word "Autisim" and a mental picture of Dustin Hoffman has popped into their heads.

 

Believe me, If I had his ability I would be on the first plane to Las Vegas!

 

Until my diagnosis, I had rarely heard the word used in media unless it was used in an attempt to explain the actions of someone who was very introverted and could be descrobed as "needy"

 

Until someone famous who has achived alot stands up and says they have AS and look at what they have achived, any form of Autism will been seen as a crippling condition

 

Just my opion

 

SidiousUK

Share this post


Link to post
Share on other sites

Really good post Dartman, some excellent replies. I have to fully agree with Chris and age, no offense Chris not that far behind you, lets you see these forces being played out in cycles.

 

I can remeber reading Will Hutton's 'The State We're In' when it first came out and what struck me was his view on society and how it is constructued. Taxation is a good example to use to understand his view. What he says is that we are best served either by paying very low taxes and that places all the wealth in the hands of people to construct their own lives in a sustainable way, or we pay very high taxes which enables the state to provide very high quality provision for all and we are left with small amounts of disposable income to diferentiate our positions. His argument is that these positions are driven on political ideology, but both are prefferable to consistently floating around in a compromised no man's land which this country has for many generations. To take up neither idealogical position is simply to continue to live in a mess which really benefits no one.

 

I think the post highlights that we are now seeing a mess within a mess. Dartman I do share your concerns, are we setting up an Autistic generation for a massive fall. I can see posts from adults on here asking about adult diagnosis thinking this will be the answer but than am accutely aware that there are no adult autistic services in my area. Are we creating a generation of AS kids who go through special schools building a self image of 'needy' and then emerge into adult life and realise there are no resources available and that there is in contrast a move to remove that badge, which was valid for economic reasons.

 

The real issue here is that AS is not a 'disability' rather it is a 'condition' in my mind and I suspect that is a belief shared by many. As we go through repeated political cycles as Chris has described the middle ground is inevitably squeezed and the polar ends are pushed further apart, the poor get poorer and the rich get richer. Areas such as 'traditional disability' tend to hold firm in the middle ground whilst there might be losses in some areas 'care' for example they might be compensated for through developments in 'rights'. My concern is that concepts of 'conditions' do not follow this rule, rather they are fashionable.

 

A lot of what we have seen constructed around the autistic spectrum, diagnosis, support, parental expectations, financing, charitable work, employment opportunities has all been done within a singular political cycle and as such the question has to be asked has it been constructed to pass the test of time, I think not! My partner works in special education and she would casually describe ASD as 'fashionable' at present. This raises the question do I want a condition which is fashionable, and the answer is if I do I have to see it for what it is.

 

In my youth I was a highly fashionable individual. Once based in London and given access to concentrated culture even more so. I would be paid to go home at weekends to play rugby and would go out into Liverpool and Manchester and be a bit of a stand out individual. But we have to learn that fashion is something we have to live without. At the same time I was studying at university and undertaking teacher training and once or twice a year and so my life was a cycle of play hard work hard. An ex girlfriend a top hair stylist would do my hair. In play cycles I was an 'intellectual punk' my hair brightly coloured gelled up into creations, sufice to say I could sit down on a train every week and no one would come near me unless there were no seats available. I made sure my hair was carefully dyed so that when teaching practice came around a neat No.3 haircut would remove all traces of my punk heritage apart from some outrageous ties I would wear with a pretty smart suit and white shirt set up. Fashion has to work like this for it to be effective. It should not include elements such as tatoo's for example that is more of a life decision. I raise this point in that I am not too sure people understand that ASD is currently fashionable. I know at the time people understood what the 'punk' thing was all about and how it evolved, ask around outside my generation today and there are very mixed messages floating around a lot of half truths. Music and clothes can be played around with without too much harm being exerted, mental health conditions, that's something on a completely different level.

 

I kind of feel like my punk hairstyle AS in fashionable public culture is something I can live with and I can live without. Deep down I know I have always been a bit of an anarchist very anti-establishment and that punk culture was an expression of this personality trait. I have also been very aware of a mental condition troughtout my life which has been given a badge of AS, likewise it is part of me. When I went to London I met a lot of what I would consider 'fake punks' at the time. At the time I had along with others gone out to the Toxteth and Moss Side riots, I had supported the minners picket lines in my home town, I had every right to be an anarchist, punk was that evolution for me. In London I came across wealthy middle class kids on the Kings Road parading the 'style' and felt what the ###### have you got to be angry about! The point I am raising here is it is very important how and when you move into fashionable circles. Cultural fashion only works by adopting style elements which are anything but fashionable in their conception. By then making it cultural niche areas become saturated loose that important credential 'cool' and as a result colapse. What is left are the origonal exponents of the concept whilst many others simply move on taking their cliches with them. I kind of see this thing happening around ASD in the not so distant future.

 

When this next phase happens we will be question structures as we are with punk rock in an entirely different area. here we ask was this an important development in the history of music development and popular culture or not? The question structure around ASD is similar is this a disability or not?

 

Food for thought.

Share this post


Link to post
Share on other sites
... are we setting up an Autistic generation for a massive fall. I can see posts from adults on here asking about adult diagnosis thinking this will be the answer but than am accutely aware that there are no adult autistic services in my area. Are we creating a generation of AS kids who go through special schools building a self image of 'needy' and then emerge into adult life and realise there are no resources available and that there is in contrast a move to remove that badge, which was valid for economic reasons.

 

A lot of what we have seen constructed around the autistic spectrum, diagnosis, support, parental expectations, financing, charitable work, employment opportunities has all been done within a singular political cycle and as such the question has to be asked has it been constructed to pass the test of time, I think not! My partner works in special education and she would casually describe ASD as 'fashionable' at present. This raises the question do I want a condition which is fashionable, and the answer is if I do I have to see it for what it is.

 

True, although it may make uncomfortable reading for some.

 

With regard to adult diagnosis,I can only speak for myself but I never thought that getting a diagnosis would be the answer to my problems, just that it would help knowing that I was not alone and that there were others with the same condition. And I was correct, it is a help. It would be good if there were more adult autistic services available but I believe that as more adults get diagnosed the situation will be remedied. Would things have been easier for me if all the support - financial and otherwise - had been available when I was young? I've wondered about this and I just don't know. Easier, maybe, but would I have fought so hard to be 'normal' - particularly with regard to working.

Edited by indiscreet

Share this post


Link to post
Share on other sites

I'm so glad I haven't offended anyone. I thought I would do when I posted this.

 

Anyway, what probably worries me is the current government's ideological outlook - the Conservatives are a 'Right' party - they believe in lack of change and the dominance of the status quo. The party presumably has a lot of voters who are very rich, and don't want the young and the working/middle classes to rise (through the force of social mobility) into positions of power, because when that happens, the rich few will be challenged

 

Finally, this line of Scapegoat (Not Them But Us: Society's Challenge, Page 226) made me wonder if the general public do have a sense of fear towards disabled people:

 

q. "Those who can work that upon rigorous medical examination turn out to be just thick or bone idle to undertake intenstive (sic) course in employability, where they will learn to be punctual, meticulous, smartly dressed, articulate, and gain working attitute. Those who fail the course to be deployed in Afghanistan as IED deterrants.'

 

That quote appeared on HM Treasury's website, following a invitation from the general public on ways to reduce welfare spending.

Share this post


Link to post
Share on other sites

the general public are just selfish and ignorant and unless they experience things for themselves they stay that way,the endless discussions on benefits is the perception that the people on them don't seem to fit the criteria,like being disabled,unless a person is in a wheel chair or carrys a white stick many can't understand why some qualify for blue badges and othes don't.There are many in denyal that ADHD exists,they see that labels are to readily used on people(children) when they are really the victims of bad parents.The NAS does its best to advise the government and other bodies when Autism subjects arise. Even the odd celeb will write a something about how their child with autism makes a difference to their lives or go on telly to talk to the Morning shows about it,to try to inform people the reality of autism.What i want to see now is autism portrayed in a positive light on the achivements of people with autism make and what they are capable of given the right support .And to stress to the public that being autistic is about being a human being who see's things different.The moe that happens i believe the more autism gets accepted as a human normal life.

Share this post


Link to post
Share on other sites

Sounds like the NAS either has a lower priority on those sorts of campaigns or has a lower budget for advertising.

It''s possible - and to be honest I wouldn't have a clue - as pointed out earlier, they rely on a lot of voluntary help...

 

I just think that for people to understand autism or ASDs then some organisation should be getting more messages out for people to see, and consequently understand. Particularly in the area of work because from what I've seen on this forum, people do want to work but sometimes they have a battle on their hands - and I think this is partly due to employers not understanding ASDs.

 

I would say I am anything but "needy" but I would say that if I paid in, then payout when I need it.

 

When I have mentioned Aspergers to people that I know I have got a blank look. I have then explained that it is HFA and you can see that they have only registered the word "Autisim" and a mental picture of Dustin Hoffman has popped into their heads.

 

Believe me, If I had his ability I would be on the first plane to Las Vegas!

 

Until my diagnosis, I had rarely heard the word used in media unless it was used in an attempt to explain the actions of someone who was very introverted and could be descrobed as "needy"

 

Until someone famous who has achived alot stands up and says they have AS and look at what they have achived, any form of Autism will been seen as a crippling condition

 

Just my opion

 

SidiousUK

I agree, when I've mentioned to people that I have AS they don't know what to say or think, and if I say autism they do jump at the rainman image (the people who've seen the film do anyway).

 

Its easy to understand why people are confused because a person on the spectrum isn't necessarily gonna look like ol' Dustin - so people get conflicting and confusing messages about autism.

 

I don't think people are even aware its a spectrum!!!!

 

I think the post highlights that we are now seeing a mess within a mess. Dartman I do share your concerns, are we setting up an Autistic generation for a massive fall. I can see posts from adults on here asking about adult diagnosis thinking this will be the answer but than am accutely aware that there are no adult autistic services in my area. Are we creating a generation of AS kids who go through special schools building a self image of 'needy' and then emerge into adult life and realise there are no resources available and that there is in contrast a move to remove that badge, which was valid for economic reasons.

 

The real issue here is that AS is not a 'disability' rather it is a 'condition' in my mind and I suspect that is a belief shared by many. As we go through repeated political cycles as Chris has described the middle ground is inevitably squeezed and the polar ends are pushed further apart, the poor get poorer and the rich get richer. Areas such as 'traditional disability' tend to hold firm in the middle ground whilst there might be losses in some areas 'care' for example they might be compensated for through developments in 'rights'. My concern is that concepts of 'conditions' do not follow this rule, rather they are fashionable.

 

A lot of what we have seen constructed around the autistic spectrum, diagnosis, support, parental expectations, financing, charitable work, employment opportunities has all been done within a singular political cycle and as such the question has to be asked has it been constructed to pass the test of time, I think not! My partner works in special education and she would casually describe ASD as 'fashionable' at present. This raises the question do I want a condition which is fashionable, and the answer is if I do I have to see it for what it is.

I think the problem is that because autism is a spectrum it makes it really hard for people to comprehend what it is.

 

People on here have said they have told people about AS (for example) and when asked to describe what it is, they get people saying "oh, I'm like that" or "we all do that" or something similar.

 

I've had 2 or 3 people say those things to me.

 

Which leads to the question of what is the difference between a "normal" person having difficulties, and someone with AS whose difficulties may be similar?

 

Someone on here a while back was very concerned about the sharp increase in diagnoses of AS in particular just being bandied around as a quick answer for anyone feeling they are slightly different (or similar reasons), and they were concerned about people just throwing this label around, not for enable-ment - but disablement!

 

As such, their main concern was the devaluation of autism through the people in the "mild" end of the spectrum...

 

I sort of see this now, but the problem is, if you want people to understand what it is, how do you do that without devaluing people with a real medical condition?

 

With regard to adult diagnosis,I can only speak for myself but I never thought that getting a diagnosis would be the answer to my problems, just that it would help knowing that I was not alone and that there were others with the same condition. And I was correct, it is a help. It would be good if there were more adult autistic services available but I believe that as more adults get diagnosed the situation will be remedied. Would things have been easier for me if all the support - financial and otherwise - had been available when I was young? I've wondered about this and I just don't know. Easier, maybe, but would I have fought so hard to be 'normal' - particularly with regard to working.

I think its harder for adults - there's a lot of questions about "what if" and "why did nobody do anything when I was younger" - which is made harder by the people in our lives not understanding what we are going through, as the road of diagnosis and comprehending that diagnosis is not always a smooth journey of understanding...

 

the general public are just selfish and ignorant and unless they experience things for themselves they stay that way,the endless discussions on benefits is the perception that the people on them don't seem to fit the criteria,like being disabled,unless a person is in a wheel chair or carrys a white stick many can't understand why some qualify for blue badges and othes don't.There are many in denyal that ADHD exists,they see that labels are to readily used on people(children) when they are really the victims of bad parents.The NAS does its best to advise the government and other bodies when Autism subjects arise. Even the odd celeb will write a something about how their child with autism makes a difference to their lives or go on telly to talk to the Morning shows about it,to try to inform people the reality of autism.What i want to see now is autism portrayed in a positive light on the achivements of people with autism make and what they are capable of given the right support .And to stress to the public that being autistic is about being a human being who see's things different.The moe that happens i believe the more autism gets accepted as a human normal life.

I think you are right to a degree.

 

Before I ws diagnosed, I used to sometimes explain to people that I had depression, and because they can't see it, or its effects all the time, people do not understand very easily unless they've been through it themselves.

 

I think its very hard to make people see the down-sides of autistic spectrum disorders (to raise their understanding) while simultaneously showing people that a person on the spectrum has abilities and are people with skills and good sides too. Trying to find that balance is difficult I think.

 

However, I don't think the outright negative press on criminals on the spectrum is going to do anything good, not now, or in the long run.

Share this post


Link to post
Share on other sites

The subject matter of the thread is why I would encourage any autistic people with the wherewithal to do so; would be to go into business and self employment where they can build their own company built on mutual understanding between ASD and NT people.

 

Autism doesn't respect race or social divide, it can affect white, black, rich or poor alike.

 

My belief is the best thing for us would be for more autistics to join the employer community.

Edited by thomas mg

Share this post


Link to post
Share on other sites

if i had the executive functioning and the ability i wont run my own business.

Share this post


Link to post
Share on other sites

the general public are just selfish and ignorant and unless they experience things for themselves they stay that way,the endless discussions on benefits is the perception that the people on them don't seem to fit the criteria,like being disabled,unless a person is in a wheel chair or carries a white stick many can't understand why some qualify for blue badges and others don't.There are many in denial that ADHD exists,they see that labels are to readily used on people(children) when they are really the victims of bad parents.The NAS does its best to advise the government and other bodies when Autism subjects arise. Even the odd celeb will write a something about how their child with autism makes a difference to their lives or go on telly to talk to the Morning shows about it,to try to inform people the reality of autism.What i want to see now is autism portrayed in a positive light on the achievements of people with autism make and what they are capable of given the right support .And to stress to the public that being autistic is about being a human being who see's things different.The more that happens i believe the more autism gets accepted as a human normal life.

 

As a wheelchair user i qualify for a blue badge but i still get questioned why i need a wheelchair by people who know me. These are folks who have known me before i needed my wheels and after my diagnosis. i can get a bus pass with my wheelchair in my area but not on the grounds of being autistic. My bus pass also runs out 3 months before my blue badge!

 

The denial about ADHD i understand and get as some folks think you grow out of it!

 

i doubt there is any such thing as normal as it is impossible to define. Problem is if theres a significant increase in autistics going on tv about what they can do then people are less likely to understand the spectrum behind autism and that some have little opportunity (or in some cases ability) to achieve.

 

There was an article in the metro some time ago about a guy i know but the title made me shudder 'im learning to fit in', that should be 1/2 autistics and 1/2 NTs. Autistics learn the sayings of NTs how to request something politely how to ask for help and when and NTs stop reacting as though we do these behaviours on purpose i know very few that do.

Share this post


Link to post
Share on other sites

If they used the term 'autistic malice which rarely affects autistic folk' then that would be better than 'a person with aspergers doing xyz crime'. Unless the reason was because they 'fell in with the wrong crowd', 'didnt understand some unwritten social rules'.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...