EPQ - Is the media representation of AS accurate ?

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I am a student at Altrincham Girls Grammar School (Manchester, UK), going into my final year of sixth form and I am currently undertaking an Extended Project Qualification. In this, I have to spend a minimum of 100 hours researching a topic of my choice to produce an artefact and 1000 word report. To satisfy the brief I have chosen to answer the question "Is the media representation of Asperger's Syndrome accurate?" following up by producing a short documentary on my findings.

For this, I would like your help. I have watched several TV programmes/films depicting characters who appear to have AS (My Name is Khan, Dear John - the father and neighbour, Skins series 3 and 4 - JJ) as well as having read 'The Curious Incident of the Dog in the Nighttime'. I have also done background research on AS so I have a clearer understanding.

I would appreciate it if you would take the time to fill out a short questionnaire about Asperger's in the media. Your answers may be used in my research project and final documentary, so please let me know if you would prefer to remain anonymous.

The aim of this piece of research is to investigate public perceptions of and opinions in relation to Asperger’s Syndrome, and also AS in the media. By completing the following survey you are taking part in the research, however you have the right to withdraw data at any time before, during or after your completion of the questionnaire without consequence or having to give a reason. Any information you give will remain confidential but may be used in the research of the project.

1. What do you understand that Asperger's Syndrome is?

2. When did you first hear about Asperger's Syndrome, and where, for example, was the first time you heard of it when you were diagnosed or had you heard about it before and where from ?

3. Have you seen any films/TV programmes showing characters with Asperger’s?

4. If so what are they?

5. Have you read any books which have characters with Asperger’s in?

6. If so what are they?

7. Have these aided your understanding of Asperger’s?

8. Please give us a brief description of your opinions on the media representation of Asperger's Syndrome ?

Thank you for giving your time to answer the questions. Any feelings or responses you may or may not have as a consequence to this are perfectly normal. I would like to remind you that you have the right to withdraw you data at any time should you feel uncomfortable.

Thank you in advance for your time,

Siobhian Moores.

aspergers syndrome has not had much media coverage,there is one tv show in the usa but as far as i know thats about it.the temple grandin movie was good though.if anything the problem is under representation

An excuse to say that otherwise completely mentally stable people are somehow ret*d socially because they got bullied as children for being different and hard to just instill values in when what they needed to be told was how and why.


My parents, ten years after they first heard about it. I wasn't happy.


No

yes

The Curious incident with the dog in the night time was apparently according to the book cover. However, the author actually said that it wasn't and he's tired of people bugging him about asperger's, which is good because I don't like the protrayal.

If anyone believed any of these portrayals of Asperger's it would just be a self-fulfilling prophecy.


Encyclopedia Dramatica is an example of Online Media's belief of who we are purified and distilled. As for offline media I think it pretty much comes down to people with a severe need to feel superior making up traits about us. For example I remember a daily mail article that said we had 'no imagination'. Well I can tell you that my imagination would have certainly frightened them for a while afterwards. Whenever they do want to be positive it's always the old 'let's give the ret*d a hug' shtick. There has never been I feel any accurate representation of the three major feelings that most of us have: 'What am I doing wrong?', 'I don't need your help, quit trying to fix me' and 'I am a playtoy for weird cultural standards'. Fortunately there are enough sane individuals to break up this pastiche of madness, but theyare just that, individuals.


Your respect for our opinion is appreciated. It's nice to know someone actually wants to come on to wrong planet and hear what we have to say.

Always happy to help

Well the long version runs to about 500 pages, in synopsis, but the short version is that Asperger Syndrome is a form of Autism that amounts, in outward effect, to social, and often emotional, dyslexia. Which sounds like a very small thing, but the thin end of a wedge always does. Over time the original condition becomes compounded by the disability it causes in socialisation, development and learning, and with the damage caused by other people's destructive reactions. Asperger Syndrome can easily be crippling, but it can also, given different circumstances and attitudes, be perfectly manageable, an even, in some areas, a distinct advantage.



I actually first heard of it before I was diagnosed from someone who didn't even understand it properly was trying to use it as a (totally irrelevant and misinformed) excuse for appalling behaviour that involved a lot of stalking and troublemaking.


Plenty


Inspector Morse (mostly written before the diagnosis was known but obviously based on a person who was an Aspie particularly in the books - see below)
As good as it gets
Big Bang Theory
Bones
NCSI (if I have the right acronym)
House
Just Noticed the BBC's "Casualty" has a great Aspie Doctor too


Not so many.



Only "Inspector Morse" springs to mind, but I have come across a few other, scattered characters


Not really.



Brief? That might be too challenging to keep it brief.

The media representation of Asperger's Syndrome (away from fiction, which tends to be more accurate to the point of causing me to wonder if Aspies are not over represented in "post production") is, so far as I have seen it, utterly appalling. I persistently see negative visual images of slack jawed, dull eyed individuals with an unappealing "alien" (as opposed to appealing and exotic) cast to their features. This is all quite deliberate strategy. Surprisingly few people realise that while it may be true that the camera never lies, the cameraman and his team often can with selective use of lighting, angle and photo editing...and what is more, that is common practice. It is even possible to hugely distort the visual image somebody presents on live TV by clever use of lighting and angles.

As far as the text and descriptive elements are concerned, the Aspie is often presented as some variation on a bizarre individual who needs to count paperclips and huddle in a blanket to stay calm, often presents with violent and/or challenging behaviour, and has a high IQ but the mind of a child with severe OCD. There are variations on this, of course, but each tends to be more bizarre that the last ("fortunately Aspie are usually goodlooking so they have no trouble marrying someone to look after them" - yep, that REALLY appeared in national print press). At best we get portrayed as camp, dopesmoking wastrels who are well able to hack the pentagon but not to serve the time because we are too dependent on out long suffering mummies (and I very much doubt if that is even an accurate protrayal of Gary McKinnon )

Most of all, the media representation of Asperger Syndrome dehumanises us...we are never seen as loving fathers playing with the kids...women by more high heel shoes than they need...lovers...sinners and fools...and everything else we are, and do, that makes us not only Aspies, but identifiable with adult human beings...(or kids...)

In fact, I don't think we are ever really portrayed as adult human beings at all.

I can't promise I'll be of much help but I'll give it a shot.

It's a book. It's a movie. It's not real. And it's real. It's a category of labels, facts, and data. It was in your breakfast this morning. It's a lonely thing and it's a lovely thing. It is and it isn't, you see?



A couple of years ago in some high school Psychology textbook. I was 17 and still had baby fat on my face. Never diagnosed and not for awhile. In the case that I need to pay off student loans right away, I may join the Army. That's how they institutionalize us poor people.


One.


It was in the film Adam. Otherwise, I suspect many film/TV characters roam the fictional world undiagnosed. Oh no!


No, but it is my suspicion that much literary work have been produced by Aspergerian minded individuals. The long, whimsical prose pacing back and forth, not shutting up and written in what I perceive to be a dull, monotonous voice speaking about the alienation of the individual within society. I very much enjoy literature and if the writers are "geniuses" as critics and literature professors describe, then perhaps there is something to be said of Aspergers and books. What I mean is that there are supposed ties between autism and genius, so these "genius" writers' works might identify more with an Aspergerian outlook than a neurotypical's. Much of literature and Aspergerians tend not to be very entrenched in a reality governed by social etiquette. Therefore, perhaps Asperger's isn't so underrepresented as it is misunderstood.

Of course, this might just be me projecting my own values into things but I believe it to be so.


N/A. See above.


Maybe. I learned more about Asperger's from documentaries, magazines, and books than from TV/film. It's a way of life that is hard to contain within a 23 minute program or 90 minute film. You have to experience it. That's probably why I feel literature, if interpreted in this way, allows much more understanding of the Aspergerian way of life than TV/film. Being an English Major, we already have psychoanalytical and socio-economical interpretations of literature, so why not add something about "disabilities" as well? It would be Lacanian in the sense that there are gaps between the idealized norms society expects and the real, therefore, forcing the individual to compensate their life in tragic-comedic proportions.....(Gosh, I hate literary theory).

On an unrelated note (Aspergerian tendency), a film/novel I just ran into, Christy Brown's My Left Foot, would make an interesting Lacanian/disability/autistic study.


Keep writing.

Thanks for hearing our opinions out and for putting up with me.

Well I'm HFA so on that technicality my answers can't be counted. But may I say, my answer to 8 would have been frank:

Common media representation of Aspergers/Autism in general is usually sensationalist bull****. But then what isn't these days? It doesn't sell as good if it's not some sob story, cuteness factor, exploding vans or tailored to instil fear into the heart of man.

1. What do you understand that Asperger's Syndrome is?

A disability on the autism spectrum which encompasses a range of differences in sensory processing, communication and social interaction, emotional regulation, motor skills, executive functioning, cognitive style, and a lot of other things that would take me too long to describe fully. There are variable expressions and every individual is unique, which is important to remember.

2. When did you first hear about Asperger's Syndrome, and where, for example, was the first time you heard of it when you were diagnosed or had you heard about it before and where from ?

I first learned about AS when I was diagnosed at age 17, which was more than six years ago. I knew about autism before that, though.

3. Have you seen any films/TV programmes showing characters with Asperger’s?

Yes

4. If so what are they?

Parenthood, Mozart and the Whale, various documentaries and non-fictional pieces. Also, America's Next Top Model had a contestant explicitly identified as being diagnosed with AS in season 9, and I watched that.

5. Have you read any books which have characters with Asperger’s in?

Yes

6. If so what are they?

For the sake of simplicity, I'll list only books with explicitly identified characters. These include The Curious Incident of the Dog in the Night-time, House Rules by Jodi Picoult (a book I have a particular loathing for), The Kitchen Daughter by Jael McHenry, Mockingbird by Kathryn Erksine, Marcelo in the Real World by Francisco X. Stork, and a few fictional books put out by Jessica Kingsley, AKA the autism publisher.

7. Have these aided your understanding of Asperger’s?

No, not really. I understand AS--which I basically consider to be autism--from living it, having a partner who is also on the spectrum in addition to several friends, and talking with other autistic people online and offline. Plus I've done a fair bit of non-fiction reading, but that is highly variable in terms of how helpful it actually is. In some of these cases, these representations actively made me more confused, especially those that I read before really knowing much about it. My mother told me she saw pieces of me in the boy from the Curious Incident, but upon reflection I'm rather at a loss about that.

8. Please give us a brief description of your opinions on the media representation of Asperger's Syndrome ?

Pretty damned bad. I'll focus on fictional representations since that seems to be the focus of your questions. Although the quality of the works I mentioned are highly variable, in general there are some pretty awful representations out there. And unfortunately, the worst ones tend to be the most popular while the ones which are better are relatively obscure. Here are the main problems as I see it:

1. The laundry list. This is where the fictional character receives every single autistic trait, usually to an extreme degree. No one actually has every single autistic trait. That's just not possible. These characters are caricatures rather than fully fleshed-out characters. Christopher from Curious Incident obviously qualifies, as does Jacob from House Rules. Also, because stereotypes are often incorrect (such as the idea that we lack empathy), this leads to inaccurate portrayals. Oftentimes, these characters fit other AS stereotypes: usually male, talented at math and computers, possibly a savant, seems emotionless, etc. While some autistic people do have some of these characteristics, the constant repetition of these stereotypes means that the public is not exposed to a full range of how autistic people act. FWIW some of the better representations, such as The Kitchen Daughter, feature autistic girls/women with non-stereotypical interests.

2. The focus on parents and how hard it is to have an autistic child. The viewpoint of parents is oftentimes centered to an absurd degree, and the whole piece seems only to be about how hard it is to have an autistic child. This is often played up for melodrama, as in the show Parenthood. House Rules also features this to a ridiculous degree. From reading this book and other Jodi Picoult books on similar themes, I get the impression that Picoult thinks that having a disabled child is a fate worse than death, or something. It's insulting, frankly. I do not believe that being autistic should be treated as a tragedy, but these representations usually do just that. In Parenthood, the parents act like Max (autistic child) has a diagnosis of cancer, not AS, when they tell him his diagnosis. In House Rules the mother goes on and on about how awful her life is and how all she wants is for her son to blend in and be more normal. (House Rules also suggests that vaccines cause autism, which is just not true. The science is pretty clear.) It's offensive, and frankly I'm tired of autism discourse focusing on parents to the exclusion of autistic people (some of whom may also be parents). This happens in journalistic accounts of autism to an even greater degree.

This isn't exactly brief, but I have a lot to say on this subject.

When infants first recognise faces in their visual fields, there's a reflex, in the normal child, that produces smiles in response to smiles. That reflex brings increased attention and forms the foundation for social thinking and "theory of mind"
In the aspie child, that reflex doesn't work. Everything in reality construction and the bases for rational thought develops in isolation, with largely random results.

Aspie adults? Well, anything's possible.


When I first read about Asperger's - in a New York Times article in 2004 - it struck a chord of recognition. I was fifty-two years old. Another five years passed before I made the diagnosis official.


Media representations of Aspergers aren't rare. Many of them leave out the Aspergers part and just deal with misfit individuals. Doc Martin, for example. Others - like Big Bang Theory - make a big deal out of the diagnosis and its peculiarities.

Yes, I've seen a lot. The absence of good treatments for adult aspies means they all tend towards the tragic - even the comic ones.


Sorry, I wasn't reading ahead.


More than a few, yes. The same distinction between implicit and explicit Aspergers is present in the printed word.


Well, there's the "Dog". There was the library book I read last week which made a young aspie adult the solution to a murder mystery. There's Camus' L'Etranger. I'd have to search to widen the list, but there are a number of them.

And, of course, since you didn't restrict the question to fiction, there are a wide range of factual or biographical studies that include Aspergers.


A little. I live a fairly restricted life, and other people haven't played large parts in it so far, so the extent to which my understanding can be extended by a book isn't great.


Let's see: aspergers is primarily a disorder of children. For adults to be afflicted by it is something out of the ordinary, frequently associated with smart lawyers avoiding prison terms for their clients. It's shameful, really, for an adult to be resorting to the Aspergers diagnosis - there are thousands of perfectly respectable adults who could make such claims but don't out of sheer human decency.

And, in the domain that the media haven't much gotten into yet, those undiagnosed adult aspies might be successful, might be miserable, again - anything's possible. It's easy for an adult sufferer, unconscious of his or her disorder, to be obstructive to the notion of adult autism.

I think the Wikipedia definition expresses it well in layman's terms: "... an autism spectrum disorder that is characterized by significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported."


~2007. Diagnosed in 2009.


Yes.


"Bones" depicted Hollywood's interpretation with one of their characters. Some parts of the portrayal were spot-on, and some were not.


They all seem to have AS - comic-book characters are caricatures to begin with, and most seem to fit the general AS profile.


n/a


Not at all. Social websites like WrongPlanet have given me the greatest insight.


Exaggerated with a lack of compassion for the feelings of "Aspies" who may be watching. We're not dispassionate robots, nor are we sociopathic killers. We are people, first and foremost - people with ambitions, emotions, feelings, thoughts ... et cetera.

For the record, my diagnosis was for a "Mild form of AS/HFA". I am male, in my mid-fifties, have earned an MSEE degree, and work as an electrical engineer in the transportation industry.

Hi everyone,
Thank you so much for all of your replies so far ! They've all been very useful in my research, and many of them are extremely interesting to read through. Keep them coming !

Also, nexus, feel free to fill in the survey if you want to - you dont have to have AS to take part.

Thanks, Siobhian.

Asperger Syndrome is autism with normal intelligence and relatively normal speech.
I first read about Asperger Syndrome online, in 1998, a few months after realizing I was autistic. (I was searching the web for information about autism, and so discovered the term "Asperger Syndrome").
Yes.
Mozart and the Whale, Adam, Mary and Max, Ben X, Snow Cake (HFA rather than Asperger, but it is the same), Temple Grandin (HFA rather than Asperger, but it is the same).
Have read some autobiographies by aspies. Haven't read books with fictional aspie characters.
Nobody Nowhere (HFA rather than Asperger, but it is the same), Songs of the Gorilla Nation, Look Me in the Eye - My Life with Asperger, A Blessing and a Curse - Autism and me (HFA rather than Asperger, but it is the same), Parallel Play - Growing Up with Undiagnosed Asperger, A Painful Gift - The Journey of a Soul with Autism.
Yes, they did.
When comparing real aspies to fictional aspies, it is easy to see that fictional aspies tend to be very exaggerated. Real aspies can have very subtle Asperger Syndrome and can appear almost neurotypical. Fictional aspies tend to have very extreme Asperger Syndrome and are very different from real aspies.