autism

Issue 6 Online Extra Autism The Clinical View: What is Autism by Kim Painter, Ph.D.

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

Whilst some of the terminology of this article may cause distress to some autistic readers, please be aware this article has been included as the author makes some relevant points about autism in the workplace and the importance of non-autistic people taking the time to understand autistic people. We are also publishing it in order to highlight the ‘autism as a disorder and deficit’ approach of the clinical community. As The Autism Issue challenges this view, it is important this article is read in conjunction with the full issue here.

What is Autism by Kim Painter, Ph.D.

Autism is a neurodevelopmental disorder characterized by deficits in social communication and interaction.  The hallmark symptom of an autism spectrum disorder (ASD) is a lack of reciprocity in interactions with others.  The vast majority of individuals with ASDs want to interact with others but lack the skills to effectively navigate social situations.

Each person on the spectrum has specific strengths and weaknesses.  Some may be very verbal while others may have little understandable speech.  Much of our communication with one another is non-verbal, and those with ASDs often misinterpret social situations and may over-attend to content, missing the social nuances occurring.

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Issue 6 Online Extra Autism The Clinical View: What is Autism by Dr. Sarah Cassidy

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

Whilst some of the terminology of this article may cause distress to some autistic readers, please be aware this article has been included because the author makes some relevant points about the diagnosis process and has published some research which is covered in the main issue (P10 An analysis of the diagnostic process at the CLASS clinic). We are also publishing it in order to highlight the ‘autism as a disorder and deficit’ approach of the clinical community. As The Autism Issue challenges this view, it is important this article is read in conjunction with the full issue here.

What is Autism? by Dr. Sarah Cassidy

Approximately 1% of the population (around 700 000 individuals in the UK), are living with an autism spectrum condition. Autism spectrum conditions affect development of the brain and behavior. People with autism have marked difficulties in relating to and communicating with others, and may, for example, struggle to maintain peer relationships or hold a conversation.  They also show repetitive behaviours, or a narrow range of obsessive interests.  This may involve memorizing and discussing details and facts about a particular topic to the exclusion of other activities, having to take a particular route each day to school, or having to follow a set routine.

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Issue 6 Online Extra Autism The Autistic View: Discourse and disposition: exploring the concepts of autism and neurodiversity By Damian E M Milton

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

It would not be possible in this short article to give an overview of the myriad of ways in which autism has been conceptualised since it first entered into the clinical lexicon.  Instead, a reflection regarding some of the most significant schisms in how autism has come to be defined and conceptualised will be given.

“Extremes of any combination come to be seen as ‘psychiatric deviance’. In the argument presented here, where disorder begins is entirely down to social convention, and where one decides to draw the line across the spectrum.” (Milton, 1999 – spectrum referring to the ‘human spectrum of dispositional diversity’).

In 2005 my son was diagnosed as autistic with severe learning difficulties.  As I began to research what was said about this label, I found myself rejecting most of what was said as not being applicable.  It was not until I read the work of others within what could be called the ‘neurodiversity movement’ (notably Jim Sinclair, Claire Sainsbury, Amanda Baggs, Dinah Murray, and Larry Arnold), that I realised that this was what I had always been trying to conceptualise when I was a student many years prior.  I was diagnosed myself in 2009 at the age of thirty-six.

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Issue 6 Online Extra Autism The Autistic View: The Strengths of Autism By Michael Barton

Michael Barton
Michael Barton

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

When you hear the word “autism”, what do you immediately think of? A child playing on their own in the corner, lining up trains?  A train spotter, maybe? What about that computer geek, or Rain Man memorising 6 packs of cards? Autism is generally perceived as being negative, but it need not be. Think of how the world of Physics was changed by Einstein and Newton, both of whom exhibited autistic traits.

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Issue 6 Online Extra Autism The Clinical View: A Conversation with Jonathan Green: The ‘Other’ British Autism Academic

Jonathan Green
Jonathan Green

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

Jonathan Green is Professor of Child and Adolescent Psychiatry at the University of Manchester. Jonathan co-led the UK’s first study into ICD Asperger Syndrome and recently published a paper [1], which followed up on data from the international “Autism Genome Project” [2] part-funded by the controversial organisation ‘Autism Speaks’. The New Idealist talk to Jonathan to find out more:

Can you tell us about the findings of your most recent research paper?

Yes, I wouldn’t say I’m….I mean I’m a co-author on that, but not the main author. So that’s a genetic paper and I’m not a geneticist so if you want to highlight that work I’m not the most authoritative person to talk about it. [after some discussion Jonathan then agrees to provide a synopsis of the paper he co-authored].

Basically, the search for the genetic basis of autism has been a really complicated thing which has been going on now for 15 years’ or more, and while we started off thinking that…there’s no question that autism is a highly heritable genetic disorder in some way…that’s where it started, that’s where we start from, exactly how is the question.

so probably there are now around 1,000 genes that have been potentially associated with autism.

We started off with the idea that there were a limited number of genes that were probably responsible, but as the work has gone on the number of potential genetic influences has spiralled and increased hugely, so probably there are now around 1,000 genes that have been potentially associated with autism.

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Issue 6 Online Extra Autism: The Clinical View with Stan Lapidus, CEO of SynapDx Corp

Stan Lapidus
Stan Lapidus

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

Stanley (Stan) Lapidus is a life-science entrepreneur and inventor who was recently inducted into the American Institute for Medical and Biological Engineering (AIMBE) College of Fellows, in recognition of Stan’s contributions in the field of biomedical engineering (Stan has previously pioneered new technology in PAP tests for cervical cancer screening and developed a non-invasive, DNA-based screening test for colorectal cancer). Stan holds academic appointments at Tufts and MIT and is now turning his attention to Autism screening as founder of the US-based SynapDx Corp, which is currently running the industry’s largest prospective, multi-site autism clinical study to evaluate its new blood test designed to help doctors identify children with autism at a younger age. The New Idealist spoke to Stan to find out more.

On moving into Autism Research

The things that I look for, both as a scientifically curious guy and as an entrepreneur, are problems in medicine that are clinically important and scientifically overlooked. At this point, the number of really smart people cracking problems in cancer makes it really hard to come up with “Aha! I see something that others don’t”. It was true for the work we work we did with the pap smear, it was true for the work we did with colon cancer, but my curiosity started ranging more broadly and I got introduced – it was actually 2009 when we started the company – got introduced to autism by, it was actually a colleague, a professional colleague who simply asked me: “Stan, have you ever looked at the diagnosis of autism?”

a professional colleague who simply asked me: “Stan, have you ever looked at the diagnosis of autism?”

I had not and, in a night’s reading, I leaned a number of things that lit me up, again, both as a curious guy and as an entrepreneur. And they were the prevalence of autism, the impact it has on families, and the benefit of early detection… This is a disorder, as prevalent as it is, that was, and still largely is, invisible in American society.

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Issue 6 Online Extra A Different View of Autism from Nathan Foy and the Autistic Society Greater Manchester Area

Nathan Foy
Nathan Foy

This article is part of the Online Extra section of The Autism Issue from The New Idealist magazine. You can read the full issue here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

The New Idealist met with the team behind the Autistic Society Greater Manchester Area, which is supported with grants from the BBC Children in Need Fund and the Zochonis Charitable Trust to provide social, leisure and life skills support to autistic people and their families.

Many younger members grow up to become adult volunteer mentors and The New Idealist met one of these members; 19 year old Nathan Foy (who featured in a BBC Children in Need video with former Doctor Who David Tennant and was subsequently invited to the Houses of Parliament), as well as Key Worker Paul Nugent to discuss the role of the charity. Here are the highlights of the discussion.

LA (Lydia Andal, Managing Editor The New Idealist): So, this is the New Idealist with Nathan and Paul, and Paul is the…

P (Paul Nugent): Key worker

LA: …Key worker, and, Nathan, you are autistic..?

N (Nathan Foy, Volunteer): Yes, I’ve been a member and now I’m a volunteer as well.

LA: OK, and you were just saying before that you joined four years ago and I know you just started, but can you just tell us again, why did you join?

N: Well, [it was] through my Mum really because she, well of course, was looking out for places and they’re extremely difficult to find at first – until you actually get into that network.

But the year before I left school, I’d just turned fourteen, because of a few difficulties that were going on there and I was quite depressed. [I’d] left school and I was extremely low on confidence, couldn’t leave the house for many months because of what had happened, mainly, quite a long story…

But I came here and, at first, I couldn’t really talk to anyone for ten months because I was not very confident, but then I started to and I got into it (laughs).

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Issue 6 Online Extra With Temple Grandin on Autism, Innovation & the secrets of Silicon Valley

Temple Grandin
Temple Grandin

This article is part of the Online Extra section of The Autism Issue from The New Idealist magazine. You can read the full issue here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

Dr. Temple Grandin is a scientist and author who speaks at many conferences on the strengths and challenges of autism. In 2010, Time Magazine listed her as one of its most ‘Important People of the Year’. The New Idealist had a fascinating discussion with a jet-lagged but pin-sharp Temple who called rather unexpectedly on an otherwise quiet Saturday afternoon after her return from a recent work trip to China (it was the early hours of the morning US-time and whilst an interview had been agreed, the time and day not had not yet been set).

Luckily, The New Idealist had already drafted up some talking points when the phone call came and not wanting to miss the opportunity to talk to this amazing (and very busy) woman, we were good to go…

You are a scientist who has made a huge contribution to the more humane treatment of livestock. You are also autistic; why do so many great innovators have autistic traits?

There’s certain kinds of thinking that autistic people are very, very good at and I talk a lot about this in my book The Autistic Brain. I was just reading an article just now (Changing perceptions: The power of autism, Laurent Mottron, 3rd November 2011, Nature Journal)…he is a scientist from the University of Montreal and he’s done a lot of work on autistic thinking and there’s certain kinds of pattern-thinking, bottom-up thinking that people on the spectrum are very very good at.

[Temple then discusses how the article highlights that autistic people are able to simultaneously process large pieces of information such as large datasets much better than a non-autistic person]

…that’s something I find I’m good at doing. I’m good at trawling through the internet through vast amounts of journal articles and then pick out what are the really important things. I then synthesise all of this resource down into one short paragraph; what is it? That’s something that I’m good at doing. I’m a bottom-up thinker – I take the details and put them together. People on the spectrum are very good at details, they’re also very good at anything that requires vast amounts of knowledge on something.

In my work with cattle, the first work I ever did I noticed the cattle would balk at shadows and sunbeams and reflections and coats on fences and things that most people didn’t notice; but the cattle noticed it. And when I first started doing this it was totally obvious to me – because I think in pictures – to look at what cattle were looking at, but to other people that was not obvious.

When I was doing this in my twenties I had no idea that other people’s thinking was different, I thought everybody thought in pictures the same way I did.

During the TED Talk you showed a slide which highlighted that a horse was scared of handlers wearing black cowboy hats.

Well, that’s because it’d been abused by a handler in a black cowboy hat.

That extra level of perception and attention to detail is really unique to autism, how did you notice that?

It’s just obvious to me to notice details. The way I form concepts is to take all the details put them together and form a whole. That’s how I form a concept. Instead of taking a theory ‘top-down’ it’s ‘bottom-up’.

[Temple again references the Nature article and how with autistic researchers ‘ideas come from available facts and from them only’ and whilst a vast quantity of data is required to draw conclusions, results are incredibly accurate. In contrast ‘top-down’ researchers consider several key ideas, design a model and then look for facts to support or falsify the model. The article explains that having two types of brains in the same research group has been extremely productive]

You have said previously that verbal thinkers make great journalists and stage actors.

The verbal autistic thinker tends to remember more facts. They make good journalists, they’re good at writing good at factual writing – they remember lots of facts and stage acting…social skills… in real life you have to act, stage acting’s just the same.

Clare Danes played you in the biopic of your life (the 2010 HBO Film Temple Grandin); what involvement did you have in how you were portrayed on screen as she seems to have done a great job of capturing both the awkwardness and beauty of autism?

Well what she did, I spent about five hours with her, she videoed that entire meeting I had with her to get my mannerisms and movements. Then I gave her twenty-year old VHS tapes that I had, old TV shows, old lectures…all the stuff I could find back to 1988 – it was 25 years old, where I was more autistic. And she had about six hours’ of that material which she played over and over and over again. She worked with a speech coach and a movement coach and worked on it very, very hard.

And I had a lot of input [Temple explains how she worked closely with the Producer who is a mother of an autistic child, the Director and the Writers]…all the things that show my visual thinking in that movie are accurate and all the projects are accurate.

There’s some events they compressed and moved around but when it comes to depicting autism we were really fussy about it being accurate. [That] they depict the visual thinking of autism correctly, anxiety correctly, the way I was in a teenager and in my twenties correctly.

You have said previously that “The thing about being autistic is that you gradually get less and less autistic, because you keep learning, you keep learning how to behave. It’s like being in a play; I’m always in a play.”. [1]

Oh yeah…what I’m seeing now is too many smart kids getting too coddled, getting addicted to video games and going nowhere. They’re also not learning social skills. I have kids coming up to me at meetings, they don’t know how to shake hands, their parents do all their talking for them.

When I was ten years’ old I was party hostess at my mother’s parties, I had to learn how to talk to a lot of people.

What are your thoughts on the theory that autistic women are able to mask their autism better than autistic men?

I think that’s probably true because after all women are more social so I think that’s probably true but…

That’s not necessarily a good thing though, as it can mean their autism goes undiagnosed

No.

Well I’m seeing too many people where autism’s becoming their whole entire life. When I was in my twenties I was out doing stuff in the cattle industry and my biggest problem with getting into the cattle industry in the 70s was being a woman.

In the 70s when I was working in construction, this man puts his feet up on his desk and says to me “I just can’t believe that a woman really has all this knowledge about the industry”. There was a scene in the movie with cowboys…the testicles on the windscreen (where bull testicles were placed on windscreen of Temple’s van), and that was true.

…being a woman was way worse than the autism part, I’ll tell you that much.

How are things now?

It’s totally different. These young kids today, they don’t know what girls had to go through back in the 70s, they’ve got no idea.

You have discussed your concerns that ‘geeky’ kids with autistic traits are not being developed properly at school. What you would like to see happen in the classroom to help children who think differently?

I get social skills through shared interests. I think kids need to learn work skills at an early age, that’s not getting done.

…half the people in Silicon Valley are on the spectrum – I’ve been there. I’ve been to some of the major companies and they can tell you they’ve got autism busting out all over there.

Do you find they are actually ‘diagnosed’ as autistic or…

The techies at Silicon Valley avoid the label…they totally avoid the label.

I talked to a human resource person last year and she told me ‘we know that they’re probably Asperger’s, but we don’t talk about that’.

The techies avoid the labels, and then the other extreme I see is the guy who comes up to me and all he wants to do is talk about his autism and he doesn’t seem to have any other interests.

And then I’m seeing too many kids that are turning into recluses in their rooms and are getting addicted to video games.

On Autism Research Figures & Autism in the Media

(On Silicon Valley) If they haven’t been diagnosed, they’re not going to show up in any research figures…

No they’re not and that’s the problem.

The issue with the research, is that then you have the headlines which can be fairly negative in terms of how autism is represented…

That’s right. The problem is we had a guy that started shooting people over here and they said he probably had Asperger’s (Editor’s Note: Temple is referring to Elliot Rodger, whose alleged Asperger diagnosis was given undue prominence in many stories about the mass-shooting, including an online piece by the BBC entitled ‘Elliot Rodger is Isla Vista drive-by killer’[2]).

When I think of all the Asperger’s I’ve seen in the tech industry and they’re just doing their jobs. And I can think of some people I’ve worked with in the meat industry, equipment designers…I know are on the spectrum….they never had any problems.

The problem with an Asperger’s diagnosis is that it’s not precise. They can’t do a lab test like they do with TB. The problem is if you get rid of all these genetics, well, you better like your computer because you’re not getting another one!

A brain can be made more social, or a brain can be made more thinking and cognitive. At what point does something become abnormal? There’s no black and white dividing line. When does a normal variation turn into an abnormality? I think that’s a really, really important concept.

…we have a huge shortage in the US of skilled tradespeople in things like welding and car mechanics. Now they’re not for everybody on the spectrum but I’d say that 20-25% of people on the high end of the spectrum would be just perfect as a welder or a car mechanic…and they’re taking those classes out of our schools and I think that’s making things worse because when I had friends it was doing projects together.

…if you take things like the school play out and things these kids could be good at out, well they are going to be miserable because they don’t have any friends to do welding with or do art with.

Shared interests…that’s how autistic people bond.

Shared interests. I had horseback riding and electronics lab and model rocket club. Those were shared interests…and if you don’t have those things then the kid’s got nothing to do.

[Temple then discusses her thoughts on graphic violence and autistic sensitivities]

…all the graphic violence. I want to make a distinction between…ok I saw the Robocop movie where they blew up a bunch of cars and all that, but it didn’t show graphic depictions of torture and cruelty at least the airline version didn’t and that’s where I watch most of my movies.

The airline do cut some of the nastier scenes out…I’ll read a move review and go ‘I’m not going to that’…where it shows pictures of graphic cruelty. And I saw a really good movie ‘12 years a slave’ and the airline censored out the rape scene…and I liked the airline version of it.

…There’s certain things which show graphic depictions of cruelty and I go ‘I don’t want that garbage on my hard drive, because I can’t get it out of my mind’…I’m a visual thinker so I can’t get it out.

Temple on Autism in the Workplace

We have a thing called Project SEARCH and what they’ve done with that is taken final year high school [students] and interned them in hospitals and they’ve found them some jobs…perfect jobs…things like setting up instruments for heart surgery. And they find it takes them longer to learn the job but once they learn it they’re super-good, super-accurate – if you were going to have heart surgery you would want this person setting up your instruments.

…it’s not cleaning the floor or janitor work it’s a real responsible job and they’re having a real success with this and I’ve always said all along, you’ve got to get the work experience before you graduate from high school.

(Temple then discusses the results of recent research following the prospects of those on the project [3])….what they did is they left half of them to try to hack it on their own in the job market, the other half did these internships at the hospital doing these things like setting up surgical instruments and the results are phenomenal. From 6.25% employment rate to an 87% employment rate [these figures are confirmed in the research]. I’ve always said this because I can think of all the kids’ I went to school with who I know are Asperger’s and they managed to get decent jobs…they all had paper-rounds when they were kids.

I’m seeing too many kids who don’t know how to shake hands, it’s just ridiculous. The parents do all the talking for them, they aren’t learning how to shop, just basic stuff.

You have said previously “If by some magic, autism had been eradicated from the face of the earth, then men would still be socializing in front of a wood fire at the entrance to a cave”. Currently, millions is being spent in the biomedical sector around the world in the race to find an ‘autism gene’ to help develop blood tests…

I don’t think there’s any one particular autism gene.

Aside from the ethical considerations, what do you think would happen to society in future generations if this ‘mythical gene’ was identified?

Who’s going to fix your car? What’s going to happen to your computer? Who’s going to keep your electricity on? There’s going to be some real problems if you get rid of all the people with the autism genetics.

I wanted to talk to you about autism and innovation and why that’s so important

Einstein would be diagnosed with autism today, he had no language until age three. I have a picture of Einstein that I put up in my autism talks and I go ‘what would happen to little Albert today?’. He’d probably be addicted to video games somewhere collecting a social security cheque on a disability payment. That’s what would probably happen to little Albert today.

Tesla was definitely on the spectrum (Tesla designed the modern AC electricity supply system). Steve Jobs I talk about. I’ve read the ‘Business Week’ special memorial issue to him and it was obvious to me that he was on the spectrum.

So without autism there might not be any ipods?

Well that’s right, there wouldn’t be any iPhone or tablets. When I talk about the different kinds of minds now I say look at your phone that interface, the way that interface works, that was made by an artist.

…you get rid of all those autism or Asperger’s genes and all that innovation is going to get lost. I’ve seen so many people that I know that are undiagnosed and then I talk to this human resources people at this (well known) tech company and she says ‘oh we know they have it, but we don’t talk or discuss that’.

It’s such a stigma, but actually…I see autism, I see innovation…

These tech company guys, these are people that have good jobs, they’re keeping these jobs…

So there’s all these great role models but we’re not seeing them in the media…

But then you get some people who are advocates and they’re just so negative, because their whole life has become advocacy.

[In the UK] maybe your more strict as to who gets a label, whereas we’re [in the US] giving those labels out freely. This kid has a little bit of a problem in school and a lack of friends and he gets a label slapped on him (Editor’s Note: due to the way the medical insurance system works in the US, there is a lot more funding for autism diagnosis & services than there is in the UK).

What about autism advocacy?

I think I’m a better role model if I still keep doing my real job.

You can find out more about Temple and her work at www.templegrandin.com

References

[1] http://online.wsj.com/news/articles/SB10001424052748703525704575061123564007514 [2] www.bbc.co.uk/news/world-us-canada-27562917 [3] http://link.springer.com/article/10.1007%2Fs10803-013-1892-x#page-1

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Issue Seven: The New Future Issue (Annual Special Edition)
Issue Six: The Autism Issue
Issue Five: The Doomsday Edition (Extreme Weather Special)
Issue Four: The Issue We’re All Talking About (Guest Edited by the actress Jodhi May)
Issue Three: Has Obama been corrupted by the machine?
Issue Two: IQ VS EQ – Is Emotional Intelligence what you need to succeed in the digital age?
Issue One: Downwardly Mobile? Will the next generation find it harder to reach the next level?

Issue Six Online Extra Autism The Autistic View: The Long Road Ahead for the Autistic Rights Movement By Lydia Brown

Lydia Brown
Lydia Brown

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

On May 9, 2006, the charity Autism Speaks released its first public service announcement, a video in which then-Vice President Allison Tepper Singer said that she seriously considered putting her autistic daughter, Jodie, in the car and driving off a bridge. The only reason she refrained was because she has another, non-autistic child.  On May 13, 2006, four days later, an Illinois mother murdered her autistic daughter, Katie McCarron, by smothering her with a garbage bag. During later police interviews, Karen McCarron said that she murdered Katie because she would become complete and cured in heaven.

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