Friday, 12 August 2011

Susan Greenfield and autistic spectrum disorder: was she misrepresented?

I have had many emails in response to my open letter to Baroness Greenfield. All but one have been approving. The one exception is an eminent Professor who has chided me for misrepresenting her views. I am reproducing here our unedited email correspondence. I have anonymised the name of the correspondent, as he has not given permission for it to be used, though I will happily break the anonymity if he wishes me to do so, so he can take credit for his arguments.
As a non-celebrity scientist, I would like to get on with my day job and do some data analysis, and so have decided to reproduce the debate here, so that others can pursue it. Please feel free to comment, though please note, I will delete any comments that are off-topic, i.e. those not pertaining to issues around the validity of Greenfield’s claims, and the extent to which they have been misrepresented.

From: xxx@xxx.ac.uk
Sent: 10 August 2011 13:27 
To: Dorothy Bishop
Re: Misrepresentation of Greenfield’s article

 Dear Professor Bishop,

In your blog of 28 September 2010 you flattered yourself with the aspiration of being a “Paragon”. However, your blog of 4 August 2011 betrays that aspiration and violates the principles of scientific debate. You are misrepresenting Greenfield’s article in New Scientist. To claim that she is blaming what you call “internet use” for the grievous condition of autism is a travesty. The word autism does not appear in that article; Greenfield specifically refers to “autistic spectrum disorders”. Nevertheless, you implore her to “stop talking about autism” and unpleasantly characterise her comments as “illogical garbage”. For clarity I shall repeat myself: autism is not the subject of that article.

It is imperative that scientists engage with all sectors of society and do so accurately, honourably and without intemperate, personal comments. Publishing an assertion which misrepresents the evidence is unacceptable. Furthermore, your blog ignores Greenfield’s explicit references to peer-reviewed papers which provide data consistent with aspects of her general hypothesis (which is not about autism). Perhaps I should remind you of one of the key sentences in Greenfield’s article: “it is not the technologies themselves that I'm criticising, but how they are used and the extent to which they are used”.

Your failure to live up to the aspiration you expressed in your blog of 28 September 2010 saddens me and many other members of our community. In that blog you stated: “Paragons write personal letters to authors”. However, given the public pronouncements which you have made, a public retraction of your misrepresentation is now required. Your earlier experiences as an journal editor will no doubt confirm this requirement.
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From: Dorothy Bishop
Sent: 10 August 2011 16:31 
To: xxx@xxx.ac.uk
Re: Misrepresentation of Greenfield’s article

I have no intention of withdrawing what I have said. I am happy to defend it.
You seem to think there is a clear distinction between autism and 'autistic spectrum disorders'.
There is not; many people treat them as synonyms, and those who interpret them differently regard ASD as a milder form of the same condition. There is no justification for linking either the severe or the broader category with internet use. The argument I made about a cause needing to precede it effect applies just as much to ASD, broadly defined, as to core autism. ASD does not suddenly appear in middle childhood - the symptoms are evident from around 2 years of age, and so are not plausibly caused by internet use.
If the article is not 'about' ASD/autism, then why does Greenfield mention it at all? This really does upset parents of affected children.
And isn't she aware of the large literature debating reasons for the increasing prevalence of ASD/autism diagnosis? - if she is going to cite this to support her argument, then it behoves her to do her homework.
It is really not acceptable to use innuendo to imply associations, but then back off if challenged to produce evidence.

There is a more fundamental problem here. Susan Greenfield is listened to because she is a scientist. But unlike other scientists engaged in public communcation, she does not confine herself to explaining science to a broader audience. She uses the media to promote her own new theories. What she conspicuously does not do is to publish these ideas in the peer-reviewed scientific literature. This is a shame because it means she has become disconnected from the rest of the scientific community. I would have been happy to voice my criticism by the more conventional means of peer review, which would have been private, or as commentary on a scientific paper, but I am denied that opportunity because Susan Greenfield does not publish these ideas in the scientific literature. Since her views are widely distributed through magazines and newspapers, those of us who find them flawed have no alternative but to challenge them in the public domain. I am aware that a great many people have made 'intemperate personal comments' about Susan Greenfield, but I do not accept that I have done so; I criticised the ideas rather than the person.

I might add that yours is the first critical comment I've had. I have had numerous supportive emails and comments from scientists who have not only written to say they agree, but have thanked me for raising this.
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From: xxx@xxx.ac.uk
Sent: 11 August 2011 09:49 
To: Dorothy Bishop
Re: Misrepresentation of Greenfield’s article

Dear Professor Bishop,

Thanks for your response.
You present yourself as sanguine about conflating Autism and Autistic Spectrum Disorders. I find this surprising and alarming.
Your case now rests on your conviction that all of the adolescents or adults who are currently being diagnosed with any Autistic Spectrum Disorder (at an increasing incidence) could have been diagnosed as such “from around 2 years of age”. Please direct me towards peer-reviewed prospective studies which support this claim.
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From: Dorothy Bishop
Sent: 11 August 2011 10:49 
To: xxx@xxx.ac.uk
Re: Misrepresentation of Greenfield’s article

I will send you some peer-reviewed papers when I have some free time, but meanwhile, please see Criterion C in the DSM5 proposed revision, as well as the rationale section, which explains the terminology.
You might also find it useful to talk to Professor Sir Michael Rutter, who is the world's leading expert on autism.

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From: xxx@xxx.ac.uk
Sent: 11 August 2011 12:00 
To: Dorothy Bishop
Re: Misrepresentation of Greenfield’s article

Criterion C in the link you have provided does not address the matter in question: namely, whether there is well-controlled evidence which supports your conviction that all of the adolescents or adults who are currently being diagnosed with any Autistic Spectrum Disorder (at an increasing incidence) could have been diagnosed as such “from around 2 years of age”.
Criterion C merely raises a circular argument, which would be susceptible to unreliable retrospection.
I will indeed raise these matters with Michael Rutter.
But, more importantly, I look forward to receiving from you peer-reviewed papers which substantiate your specific claims.
Sincerely
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Dorothy Bishop
Sent: 11 August 2011 15:51 
Re: Greenfield’s article

Your initial complaint was that I had misrepresented Greenfield because I had failed to distinguish ASD and autism. I trust the DSM5 document has clarified the point for you and you now accept this was not misrepresentation.
You are now demanding that I provide peer reviewed evidence for my supposed "conviction" that "all of the adolescents or adults who are currently being diagnosed with any Autistic Spectrum Disorder (at an increasing incidence) could have been diagnosed as such “from around 2 years of age”.
I have sent you information pointing out that it is is part of the diagnostic criteria for ASD to have onset in early childhood.
This is not a circular argument. It is merely pointing out that ASD, as defined by gold standard diagnostic criteria, could not be caused by environmental influences that only start in later childhood.  I reiterate the last sentence from the DSM 5 rationale section: "Autism spectrum disorder is a neurodevelopmental disorder and must be present from infancy or early childhood, but may not be detected until later because of minimal social demands and support from parents or caregivers in early years."
Note that this does not mean that all children with ASD will be diagnosed in childhood, but it does mean that they have evidence of autism in early childhood.  This is typically identified by an interview instrument such as the Autism Diagnostic Interview.
To clarify my argument.
1. When asked for evidence that the internet is changing people's brains, Greenfield stated, among other things, "There is an increase in people with autistic spectrum disorders."
To most people this would imply that she is saying the internet is a causal factor in the increase in autistic spectrum disorders.
2. There has been an increase in autistic spectrum diagnoses over the years.
However, this evidence comes from epidemiological studies that do use standard diagnostic criteria including the onset criteria (see attached articles).
3. Since internet use cannot plausibly cause a disorder starting in a toddler, this is not a valid argument.

You now demand that I prove that "all of the adolescents or adults who are currently being diagnosed with any Autistic Spectrum Disorder (at an increasing incidence) could have been diagnosed as such “from around 2 years of age”. "
This is an attempt to move the goalposts. Of course diagnosis is not perfect. There may be misdiagnosed cases. The fact that you demand this evidence suggests that Greenfield's argument (as filtered by you) is now :

a) there are children who don't have autism in early childhood but who develop some kind of quasi-autism in middle childhood
b) this is caused by internet use
c) such cases account for the increase in ASD diagnoses, even though they don't meet DSM criteria for ASD
Do you have any evidence for any of these postulates ?
If that is not what you are saying, what exactly is the claim?

You have also not responded to the point I made about the appropriate place for a scientist to publish new scientific theories. Do you think it is appropriate to make statements about aetiology of a major neurodevelopmental disorder in a non peer-reviewed journal such as New Scientist, when there is no peer-reviewed work to back them up, even if the causal claims are by innuendo rather than direct statement?
If you would like your point of view have broader recognition, I would be happy to publish this correspondence on my blog, so that Greenfield's position and the supposed limitations of my arguments could be given wider publicity.

 pdfs of the following papers were attached:
Baird G, Simonoff E, Pickles A, Chandler S, Loucas T, Meldrum D, Charman T: Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet 2006, 368 (9531):210-215.
Baron-Cohen S, Scott FJ, Allison C, Williams J, Bolton P, Matthews FE, Brayne C: Prevalence of autism-spectrum conditions: UK school-based population study. British Journal of Psychiatry 2009, 194:500-509.
Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J., et al. (2011). Epidemiology of Autism Spectrum Disorders in Adults in the Community in England. Arch Gen Psychiatry, 68(5), 459-465.
Fombonne, E. (2005). The changing epidemiology of autism. Journal of Applied Research in Intellectual Disabilities, 18, 281-294.
Kim, Y. S., Leventhal, B. L., Koh, Y.-J., Fombonne, E., Laska, E., Lim, E.-C., et al. (2011). Prevalence of autism spectrum disorders in a total population sample. American Journal of Psychiatry.
Rutter, M. (2005). Incidence of autism spectrum disorders: Changes over time and their meaning. Acta Paediatrica, 94, 2-15.
Taylor, B. (2006). Vaccines and the changing epidemiology of autism. Child: care, health and development, 32(5), 511-519.
Williams, J. G., Higgins, J. P. T., & Brayne, C. E. G. (2006). Systematic review of prevalence studies of autism spectrum disorders. Archives of Disease in Childhood, 91, 8-15.
Wing, L., & Potter, D. (2002). The epidemiology of autistic spectrum disorders: is the prevalence rising? Ment Retard Dev Disabil Res Rev, 8, 151-161.

P.S. 13.52 on 12th August 2011
A further response from xxx


Dear Professor Bishop,
I am astonished by your peremptory decision to publish our correspondence without permission. I ask you to add the response below, without any editing, as a matter of urgency.

Dear Professor Bishop,
In your first email you stated: “ASD does not suddenly appear in middle childhood - the symptoms are evident from around 2 years of age”. This non-ambiguous statement means that all people who are diagnosed with an Autistic Spectrum Disorder after early childhood will have been displaying its symptoms from around 2 years of age.
You now point out: “it is part of the diagnostic criteria for ASD to have onset in early childhood”. The difference from your initial statement is salient. Thus, it is the case that that unless those symptoms are present in early childhood, an Autistic Spectrum Disorder may not, by definition, be diagnosed.
In this context, you draw attention to “Criterion C in the DSM5 proposed revision”. As I am sure you realise, DSM5 will not supersede DSM-IV until 2013. The criteria you describe as “gold standard diagnostic criteria” are part of a proposed revision.
I shall consider just one matter arising:
Autistic Disorder and Asperger’s Disorder are addressed separately under DSM-IV. The current diagnostic criteria for Asperger’s Disorder (DSM-IV) include the following: “There is no clinically significant general delay in language (e.g. single words used by age 2 years, communicative phrases used by age 3 years). There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behaviour (other than in social interaction), and curiosity about the environment in childhood”. Indeed, a delay in social interaction is the only age-related point mentioned; no critical age is given for its onset.
I recognise that the revisions for DSM5 under current consideration are being guided by the following:
”Asperger’s Disorder. The work group is proposing that this disorder be subsumed into an existing disorder:  Autistic Disorder (Autism Spectrum Disorder)”.
If this were to be enacted, diagnosis of Asperger’s Disorder would be precluded, unless its symptoms were present in early childhood (as specified by Criterion C). Again, I feel it is appropriate to ask for evidence which supports your original statement: “the symptoms are evident from around 2 years of age”. According to your gold standard DSM5, this must apply to Asperger’s Disorder. It is reasonable for me to ask whether this has been substantiated by prospective studies which are free from potentially unreliable parental retrospection. I may be in error, but I have found no such study among the papers you kindly sent me. I sincerely apologise if I have overlooked something relevant.
The immensely complex matters of aetiology and diagnosis are not given due consideration if proposed revisions (which are still subject to consultation) are presented as “gold standard”.
In my preceding email I wrote: “I look forward to receiving from you peer-reviewed papers which substantiate your specific claims”. I am saddened to note that you have chosen to misrepresent this polite request as “demanding”. It seems that our discourse will not be fruitful and that it should be closed.

20 comments:

  1. Charlie Wilson @crewilson12 August 2011 at 12:13

    Beyond the (eye-popping) specifics of this discussion, I think you make the most important general point about Greenfield's interventions.

    She is indeed really alone amongst the increasing number of 'public engagement' specialists to start from her own ideas (some might say prejudices), float them in a general fashion within the media, and then worry about evidence afterwards. I find her approach utterly bewildering - why on earth would you want to go about it in this way? She's a trained and published scientist, she knows the right way to go about testing theories and she must know that publicising controversial ideas in this way is going to get her shot down by people in the relevant fields.

    Is it instead some form of political play, or some form of attempt to raise her profile after the mess at the RI?

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  2. Well done! This kind of pseudoscientific ramblings to support someones private (and often bizarre) opinion is becoming all too common!

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  3. You have my applause, and more importantly that of Uta Frith, certainly a leading expert on child autism. It sounds like this guy read the one piece from the Baroness and disregarded her long trend of publishing this crud. Those of us who have actually spent time researching the intersection of development, digital technology, and cognition have long viewed Greenfield's screeds as little more than technohysteria for the want of book sales.

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  4. if Greenfield genuinely feels she has never linked autistic spectrum disorders with internet use and social media, then the only misrepresentation comes from her own mouth. "I point to the increase in autism and I point to internet use. That's all." If she casts untried assertions in the public domain, they must be critiqued in the public domain. Scientists have a responsibility to convey evidence-based communication. The Lancet MMR scare had undoubtable deleterious effects on health. Making an example of aspersions by the likes of Greenfield may well prevent similar incidents in future, and should be encouraged, not rebuked.

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  5. The person who is writing to you seems to be more interested in the minutiae of defining this disorder and of when it might first become symptomatic. He does not seem at all interested in engaging with the two main points you are making: (1) Prof Greenfield's apparent implication that internet and other screen use are causitively related to these clinical disorders; and (2) lack of peer-reviewed evidence for this implication. I think these are the main points at issue and your correspondent is more interested in a side issue.

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  6. Is he suggesting that Aspergers remain a distinct diagnosis because of the internet's greenfieldian effect?

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  7. I'm just a layman but I find it properly scary how 'science' gets publicly manipulated to fit people's agendas. Susan Greenfield talks nonsense and gets the Downing Street tea party treatment while David Nutt gets fired for taking the opposite approach to evidence. I can only hope the scientific community doesn't work on the same principles.

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  8. Great point Maxine; I was about to make the same when I saw your comment. He really does go off on a tangent and ignore a lot of the problems with Susan G's public musings... I also find it striking that this "eminent professor" is obviously not happy to have his name put to his pedantic thoughts. I am in awe of how well (and patiently) Dorothy responds to these. I'm so glad there are scientists like you out there.

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  9. Dr. Greenfield has a book coming out in September.

    We have opportunists in America, too. I can say this...I have nothing to lose.

    Frankly, I was thinking of setting up a bookie sheet. Bishop versus Greenfield. He/she who guesses closest to the Amazon Rank of each professor's book by the end of the year wins a copy of the winning book. I'm betting on "The Case of the Fremantle Fingers" which is currently around #300,000 versus Dr. Greenfield's " ID: The Quest For Identity In The 21st Century" which ranks at over #1,000,000, with #1 being the bestseller. (I wouldn't actually do this because gambling is illegal; besides, I can't find the software for a bookie sheet.)

    I wish I could afford a kindle. I'd help "Fremantle" out.

    We notice, Dr. Bishop, I promise you! You've got our back, we've got yours!

    A parent of an "autistic" child.

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  10. From Greenfield's latest media appearance:

    "How can young people develop empathy if they conduct relationships via a medium which does not allow them the opportunity to gain full experience of eye contact, interpret voice tone or body language, and learn how and when to give and receive hugs? This is where experts in autistic spectrum disorders, and autistic-like behaviours, could really provide a valuable perspective."

    Obviously, this is very different to what she said earlier in the week in relation to autism and internet use. I hope your professor friend acknowledges this is a smokescreen rather than maintaining that this was what she was saying all along.

    I hope Greenfield really does consult with experts in autism. They would be able to tell her about the beneficial effects of technology and the internet, both for social skills learning and for reducing social isolation. They could also pass on their experience of dealing with pseudoscience and hypotheses that never stand still long enough to be tested. While she's there, she could ask about what happens when people start speculating about environmental causes of autism when they don't have any evidence.

    On a separate note, she should probably also be advocating research into the consequences of reading. After all, a book offers no opportunity for eye contact, voice tone, or body language. Maybe it's just me, but I've never had a hug from a book. :(

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  11. Can only think of a bit of adhom now - your correspondent is an arse and hasn't read one recent autism/ASD/ASC paper. (But in case she or he might give me a job in future, I think I shall go anonymous.)

    Reminded me of Rutter (2011, p. 657): "... What would not be possible is the contrast between autism and Asperger syndrome, but it is already clear that that does not work anyway within DSM-IV or ICD-10... if the Asperger diagnosis is to be dropped, it would be crucial to change the title from autism spectrum disorders (ASD) to autism spectrum patterns (ASP). Some individuals with Asperger syndrome do not view themselves as having a 'disorder' and, if they are coping well, intervention would not be justified."

    Rutter, M. (2011). Research Review: Child psychiatric diagnosis and classification: concepts, findings, challenges and potential. Journal of Child Psychology and Psychiatry 52, 647--660.

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  12. Just to throw some oil on the fire, learning to read has been shown to trigger structural changes in the brain:
    Carreiras, M. et al. An anatomical signature for literacy. Nature 461, 983-986 (2009) http://bit.ly/70VbcX.

    Interestingly, the changes are different whether literacy was acquired in childhood or adulthood.

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  13. Dr Brock, I've never been embrace by a book either.

    Will DSM5 define our condition?

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  14. Nico, it's well known that experience changes the brain; it can even lead to developmental delay (cf children who have experienced severe neglect). However, that's not relevant to whether internet use (in late childhood) can cause autistic spectrum disorder (in early childhood).

    I do know that when I write about other people's scientific findings for the non-scientific public, if I had some conclusions beforehand, it's really hard to avoid bringing them in, but it has to be done.

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  15. well my DD was diagnosed autistic just over 2yo, and my husband was diagnosed aspergers at age 40! So I guess you could say I have experienced both development disorders in a way. Personally I too have always loved S. Greenfield's work, i still have her VHS video on the brain - gee that must be old!!! (I don't even have a video player anymore!) Anyways, I think she should explore these kind of possible causes/contributors to autism and the like, but she appears to lack sensitivity to some people about how little is really known about Autism. Possible causes are thrown around all the time. We who live with Autism have no come to accept this. But it would be nice if she (with her reputation) were to opine that there is some link between modern technology and autism, that she be more specific, ideally backed up with research. Otherwise, it can come across counter-productive.

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  16. It is a lesson that unqualified opinion relates to the strength of the evidence for assertions, more than the person giving them. Science has a way of enforcing humility.

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  17. Fabulous work Professor Bishop. I am astounded - and horrified - to find a professor does not know that ASD is a synonym for autism in its many interesting guises. My son has Aspergers, which was diagnosed long before he touched a computer. However, he could read at age two. Maybe those dastardly books - even though he read them on my lap - caused his autism?

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  18. Dr Lewis Standing30 January 2012 at 13:17

    I do not see what the problem is in engaging with "intemperate personal attacks" personal attacks on an individual who was president of the Royal Society, a role that seeks to disseminate science and knowledge to the public while peddling her agenda the daily mail on a very frequent basis. It is simply astonishing that she makes all these claims with no evidence to back her claims, and having such an eminent position. Incidently the Royal society ran into financial difficulties while she was in charge and was sacked, which apparently due to her gender and not her staggering incompetance. In addition to her book on the subject that has been raised, (a significant conflict of interest for any paper that she does now publish btw)she also sells a nintendo DS game (to the best of my knowledge she endorses such a game advertised along with her comments in daily mail articles) that helps improve brain function, though I am uncertain that she mentions autism or ASD etc.

    Her intention, as it seems to myself, is to profiteer from the concerns and anxieties of the modern day parent both of those with children of ASD and those without.
    She could attempt to prove her cynics wrong and we would all be happy to conceed, if they were set out in a peer reviewed journal and backed by either qualitative, or quantitative (or a combination thereof) data. Until then she deserves our scorn for bringing science and a loved institution into disrepute.

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  19. Just to correct you Lewis,Greenfield was Director of the Royal Institution. She has never been a Fellow of the Royal Society, though she did win their Michael Faraday medal for disseminating science to the public in 1998.

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  20. Just stumbled up on this belatedly and wanted to say what a fabulous job you've done here Prof. Bishop. I couldn't agree with you more regarding both the argument you've made and your handling of the correspondent. This post would be better titled "a lesson in how to conduct a dignified academic argument with a troll".

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