Your views on Asperger syndrome documentaries

[Canopus]

A few questions about Asperger syndrome documentaries.

 

1. Do you think that the mainstream media portrays AS in a way that is generally representative of reality, or does it have a strong tendency to portray AS in ways that are biased, unrepresentative, misleading, or muddled?

 

2. Would you have more faith and trust in a documentary about AS shown on the BBC; or a small-scale independent production uploaded to YouTube; or purely in terms of content rather than producer?

 

3. If an independently produced documentary was critical of the NAS (I doubt that any BBC produced ones will be) then would it affect your judgement of it, if so then how?

[trekster]

question 2 there have been good documentaries about asd folk in the media. the autistic me, my family and autism, one about an autistic maths genius.

[bed32]

In general I would not trust the major TV companies to make a good documentary on AS (or anything else sensitive for that matter). They are too fond of being sensationalist and emphasizing the differences - there have been a couple of exceptions but they have been made by people with a personal insight into the issues.

 

Open public criticism of NAS would be devisive IMHO and could be very damaging to the image of AS in the country. They have no statutory role so there isn't really a "public interest" case for open criticism in the media.

 

The NAS may not be perfect but making a documentary about it is in no one's interest

[Canopus]

Open public criticism of NAS would be devisive IMHO and could be very damaging to the image of AS in the country. They have no statutory role so there isn't really a "public interest" case for open criticism in the media.

 

The NAS may not be perfect but making a documentary about it is in no one's interest

I disagree. There is a torrent of criticism of the NAS on their own forum exposing the corruption that takes place.

 

http://community.autism.org.uk/discussions/general-discussions/general-chat/frankley-im-disgusted-nas-wait-censorship

 

http://community.autism.org.uk/discussions/general-discussions/general-chat/anyone-here-getting-any-help-nas

 

Surely it would be in the interest of the AS community to raise awareness of the ineffectiveness of the NAS when it comes to providing services for people with AS because their primary interest is people with traditional autism who require residential services or NAS schools. Personally I think the way that the NAS operates towards people with AS is a cruel deception and that the NAS should revert back to its origins of traditional autism and get out of AS altogether.

 

The NAS also receives close to 90% of its income from the government which means that it is very reluctant bite the government if they are failing to provide support and services. It is probably best to describe the NAS as a quango.

[BruceCM]

I prefer videos made by Aspies & Auties but those could be the basis of a good documentary, in theory! Not having a TV & not having seen much of their representations of it, I can't really comment on that. I didn't find the NAS at all helpful, either, but I thought that was just me....

[bed32]

Do you really have any evidence of Corruption in NAS? I would be very surprised. It is one thing to think they are a useless overpaid waste of oxygen and another to accuse them of criminal activity.

 

While I understand people's frustration with NAS, a TV documentary will do nothing to improve anything. The case is not so clear cut as to make for a massive expose, so it would be bound to come across as petty infighting and I suspect that the NAS, with their well-paid communications team, will come across as a lot more plausible.

 

BTW I am a member of or support various large charitable bodies with similar sorts of remit (NT, RNLI, RYA) without exception they have the same complaints made about their leadership as I hear about NAS. The way to reform them is from the inside.

[BruceCM]

Well, a documentary could inform lots of people about Autism, which would be some help. It's also, presumably, about the way Autism is represented on TV, where characters with it are in series, etc

[Canopus]

Do you really have any evidence of Corruption in NAS? I would be very surprised. It is one thing to think they are a useless overpaid waste of oxygen and another to accuse them of criminal activity.

I have been an AS activist since 2005. My knowledge of the NAS comes from my own personal experiences and from the experiences of other people who have used it.

 

The two discussions on the NAS forum are cited to illustrate the disappointment with the NAS by its users and possible corrupt practices which take place especially where money is involved. I have not managed to verify everything written in these discussions so don't take them as gospel although I broadly agree with many of the findings and the criticism. Nothing on the NAS forum is written by myself as I am not registered to post articles.

 

Criminal activity is something I have no knowledge of but it is for a court to decide whether any NAS officials are guilty or not.

 

While I understand people's frustration with NAS, a TV documentary will do nothing to improve anything. The case is not so clear cut as to make for a massive expose, so it would be bound to come across as petty infighting and I suspect that the NAS, with their well-paid communications team, will come across as a lot more plausible.

It depends on the target audience. There is probably much truth to what you say from the perspective of the average Joe who does not know anybody with ASD and it could also upset NAS users who are happy with the services it provides. On the other hand, it could be a tremendous benefit for parents of children with high functioning AS who are not yet aware that the NAS has very little to offer them in practice because their primary interests are in people with low functioning autism who require costly residential services or fit in well with the NAS schools. Lack of awareness of the NAS results in many parents of children with high functioning AS (and some adults with the condition) wasting much time trying to obtain the right services from the NAS before finally realising that they are unlikely to deliver them so they have to go elsewhere. In the meantime lives are being ruined.

 

The NAS has an advantage that the mainstream media will give it coverage whereas disappointed users and independent support groups are unlikely to be given any. Therefore a damning documentary exposing the dark sides of the NAS is unlikely to appear on the terrestrial TV channels. It will be confined to the internet or an obscure satellite channel instead.

 

The way to reform them is from the inside.

I dispute this. Sometimes you end up trying to reform the unreformable. The NAS was originally established to support people with traditional autism and only got involved with AS in the 1990s when it was considered to be on the autistic spectrum. This is why I'm of the opinion that it would be better for the NAS to revert back to its origins of traditional autism and get out of AS altogether. I have no idea of the quality of service the NAS offers to people with traditional autism because I'm not involved with it. What I do know is that the needs and requirements of people with high functioning AS are often very different from the needs and requirements of people with traditional autism, and that independent support groups are known to provide much higher quality and more relevant services for people with high functioning AS on a tiny fraction of the NAS budget.

 

Another factor that has to be taken into account is that nearly 90% of the NAS budget comes from the government rather than donations from the public. This means that anybody who is trying to reform the NAS from inside is really trying to reform a quango rather than a truly independent charity. The NAS officials will be loathe to lose this source of revenue which places heavy restrictions on what reforms can be implemented in reality.

Edited May 16, 2013 by Canopus

[MelowMeldrew]

I just read this american report, which suggests the 'blame' for more autistic children should be put on older fathers, and advises them, do not have children after 45. As the blog stated, do we now then tell hearing parents not to have children at ANY age because 9 out of 10 deaf children are born to hearing parents. It is the end of life as we know it lol.....

[Mike_GX101]

I know it isn't a documentary but many people are first introduced to 'autism' through watching a film called Rain Man with Dustin Hoffman.

 

Dustin Hoffman plays a man called Raymond Babbit who possesses amazing mathematical abilities such as counting hundreds of matchsticks in seconds and doing mental arithmetic like 25272x27263 in a blink of an eye!

 

Aside from his amazing abilities he has very rigid routines such as having to watch a particular TV programme at a particular time even if it means gate crashing someone's house. He stops in the middle of the road with oncoming traffic when the traffic crossing system says "Don't walk".

 

This is the way many people perceive autism to involve as if it is the accepted stereotyped portrayal for those who have never met anyone autistic.

 

I'm not decrying the film because I think it's a really good film and is one of my favourites along with A Beautiful Mind but unfortunately the 'extremes' seem to stick in people's minds and many people believe everyone with autism is like Raymond Babbit.

[trekster]

Is this misconception still prevalent though? I thought campaigns and autism awareness would have changed peoples perception of autism and rainman like characters?

[Aeolienne]

Raymond Babbit was based on Kim Peek who had FG syndrome.

[velocity]

im of the slightly overly empathic type of AS, but despite that id never, ever watch a doc on AS as i spend so much of time trying to forget it. im rarely on forums for that reason. ive never read a single book (im even quoted in one and never even bothered to see what the book looked like, or how it was reviewed). ill watch something on other health conditions in which im vaguely interested, but i hate AS so much. i suppose at least online im engaged but just watching something is purely passive, so if they said things which annoyed me id have no outlet, and i do suspect id either see things i disagreed with, or which would make me upset~ either way its unhelpful to me, as im not involved.

i know this is really illogical rationale, but hey~ that's aspergers for you

 

1. Do you think that the mainstream media portrays AS in a way that is generally representative of reality, or does it have a strong tendency to portray AS in ways that are biased, unrepresentative, misleading, or muddled?

~ i see very little representation, and there remains little awareness of it, even in medical staff. ive been treated in hospital a lot recently- though my GP warned them i have As, and asked they read up on it- one nurse told me after reading up on AS 'its like you have a split personality', one spoke to me like i was a 2 year old, ive been told off for crying, asked to arrive at 10am in a waiting room, and wait there til 4 for surgery etc. noone knows,a nd noone give a flying f. oh, and obv, im racist if i ask for an english dr as i cant understand foreign accents, but all staff think its ok to move to the uk and not learn english~ those people get free interpretors, but there is no awareness training of AS, let alone support staff- for a condition defined as involving communication dificulties. gotta love the irony.

unless the doc was made by a certain type of AS person, rather than *any* AS person, or Nts, it'd be pointless. AS is so complex that most people regard it as amusing weirdness, or social rudeness etc, and have really tiresome misconceptions and misunderstandings. even the 2 'experts' who diagnosed me, knew less about it than i did, adn theyd worked in it for 5 years; i only had 2 years of time in forums, but i was able to point out things of which theyd never heard, which are published (because they only accepted scientifically verified things as fact).

then within AS some people are so unaware of the full spectrum of varients. eg- i told one As girl, at uni, training to work in AS kids' care, i cant drive. she wrote me a very kind, lengthy email, telling me to get noise cancelling headphones.

but the reasons i cant drive are nothing to do with that~ i have severe visual crowding, so any movement in my periphery is regarded by my brain as an attack, almost. im poor at multi tasking, have slow visual processing, and a host of other visual cognitive problems. but because her As doesnt constrict her life, and she's happy with it, she just thinks veryone else can be like her, but isnt trying, or can be eaily fixed with noise cancelling headphones. but, compared to her, its like ive got no limbs :/

that dr whom the beeb have on to present medical docs, is probably AS, btw, tho im unsure whether he realises it~ micheal mosley. is aw him interview some AS guy (it wasnt mentioned, but the guy was an obsessive comics collector amongst other standard give aways) and he was kind of amused by this guy in a way i thought a little tasteless and cruel (part of AS, but still, not nice to see).

2. Would you have more faith and trust in a documentary about AS shown on the BBC; or a small-scale independent production uploaded to YouTube; or purely in terms of content rather than producer?

~i think the bbc is pretty poor on this kind of thing. overly earnest, lacking in humour~ channel 4 might do it ok, though some of their things on health and whatnot are borderline vouyerism. id only watch something on tv. id expect really poor production standards on yt, sorry :/ and i only watch comedy clips and music on yt, anyway, so its no somewhere i associate with 'serious' stuff- again, my illogical As though process at work : )

3. If an independently produced documentary was critical of the NAS (I doubt that any BBC produced ones will be) then would it affect your judgement of it, if so then how?

~i know everyone is really critical of the NAS, and ive heard it some many times, even from one person whose family member had been on the board of it, that im already sceptical of it.

to be fair to them, their helpline has been very good to me, but yeah, ive only ever heard very odd stories about them.

Edited September 10, 2013 by velocity

[Livelife]

I don't think that AS is portrayed in a way that reflects the general syndrome although it does vary greatly within different people that it's not always easy to give a specific idea that covers everybody.

I think that the BBC do some good documentary programs but it would depend on the actual program before I made a decision or opinion on it. Sometimes I think they have covered a subject well others that they have completely misrepresented their subject matter and the same for YouTube some are good an accurate others are completely false and misleading, it just depends on the Merritt of the individual program.

[scruffypuppy]

question 2 there have been good documentaries about asd folk in the media. the autistic me, my family and autism, one about an autistic maths genius.

i to have Aspergers and fibro i am sure the two are connected .

[Aeolienne]

Is this misconception still prevalent though? I thought campaigns and autism awareness would have changed people's perception of autism and Rain Man-like characters?

You wish...

Call the banker who fixed the Libor rate whatever you want, but please don't call him 'Rain Man'

Edited August 5, 2015 by Aeolienne