A week in March
Sunday was Mother’s Day. I woke up in my mother-in-law’s house with a horrendous cold and conjunctivitis, my left eye swollen and weeping. My daughter was glued to the enormous television in the lounge (a rare treat for her) and I could hear my usually patient husband, now weary with ill wife, elderly mother and active 3-year-old, imploring the latter to come a wish me a Happy Mother’s Day. NO! was the resounding response. My mother-in-law admired the bouquet of flowers resting in water in the kitchen. ‘They’re for Courtenay’ my husband said. She came in to thank me for them. Not the restful start to the week I had in mind.
By Monday lunch time my eye had recovered enough to let me get on with some work. The main challenge for the SCALES project at the moment is to recruit as many schools as possible to take part in the screening phase. Ideally all 300-odd schools would say yes, but that is unlikely to happen. Realistically, we are aiming for 80% of all schools. In reality, just over 40% have agreed so far. This is over 5,000 children, and we’ve still got time, but recruitment is starting to worry me. Only 3 schools have said no, many just haven’t responded. I understand this – schools are busy places and my research project just isn’t so high on the list of priorities. But for a population sample, we need them. So I spend a fair bit of time drafting more emails, outlining what is involved and what we can offer in return. I also work on updating the database, redrafting the advertisement for the graduate research assistant and phoning various schools that have requested further information. When that is done I deal with other admin –scheduling student meetings, booking travel for the week ahead, submitting a paper revision, and writing three references for current and former students.
Tuesday I leave very early to make a 9am meeting at RHUL. I see my MSc student first – she too is having trouble with recruitment and we are discussing the options, plus possible changes to the experiment following pilot testing. I then have end of term meetings with undergraduate personal advisor students. I think this is what GPs must feel like – 10 minute slots to see how people are doing, with the serious issues raised about two minutes before the next person is due to arrive. I’m always behind schedule but today I need to leave promptly as I have a ferry to catch.
I’m visiting a special school on the Isle of Wight and arrive at the end of the school day. I’m here to collect data for an ESRC funded project we’re running that is using eye-tracking to explore language production in children with language disorders and/or children with autism spectrum disorders (ASD). I’m also here to celebrate with two of the speech-language therapists – we’ve just submitted a paper together! I have an hour or two to meet with my PhD student and the post-doc working on the project. Then we go to dinner to meet the therapists. When I came to RHUL, I set up the LiLaC (Literacy, Language and Communication) network, with the express aim of getting researchers and clinicians together to foster collaboration and make research less mysterious to the people most likely to use it. These therapists were the first to take up the LiLaC challenge – they wanted to evaluate a therapy programme they offered to teenagers with severe language and communication disorders and we helped them to do this. They are very excited about the submission and I feel a bit of a killjoy as I try to manage expectations. After all, they have never experienced the joys of peer review and I don’t want them to be too bruised by the experience. By the way, those of you dealing with REF and impact (see Dorothy Bishop’s excellent comments on this) may be interested to know that despite the fact that this collaboration has clearly changed working practice, encouraged publication of a manual that will be used by other therapy teams, and has direct implications for employability of young people with communication disorders, this does not meet the REF definition of impact – extremely annoying!
Anyway, on Wednesday I finally get to see the kids. I don’t really have time to do lots of testing anymore, but I do love it and make time whenever I can. It really keeps me grounded; the kids in this school are at the severe end of the spectrum and a day with them is very humbling. Of the vast number of research papers published on ASD, I wonder how many have any relevance to the lives of these people. For example, a study is published this week suggesting that people with autism have ‘an information processing advantage’. I haven’t read the paper in detail and unlike the participants of that study, we are investigating children with a wide range of abilities, but I just don’t see the advantages of being able to name all the racetracks in Europe, of bringing Mr Men into every conversational exchange, of asking each new person met for their list of personal dislikes, or being able to notice and then label every tiny detail on the screen when asked for a simple picture description. I am equally intrigued by the difficulties faced by the non-autistic children with language impairment. We met a bright boy of almost 14 who was unable to name any letters of the alphabet, despite extensive intervention – what is the limitation? None of our current theories seems to capture the complicated picture of strength and difficulty we are presented with.
We leave the island on Thursday afternoon. I haven’t slept much as I’m still coughing and still puzzling over the assessments we’ve done and how we’ll make sense of the data we’re gathering. It has been good to spend some time with the team – the PhD student took the opportunity to outline her analysis and writing plans for the next 6 months; the post-doc is coming to the end of his contract and is applying for a first lectureship in the most brutal academic climate. We get back to RHUL in time to drop off the testing kit and I neglect running club to race home and collect my daughter from nursery.
Friday sees me in a mainstream primary school, not for assessment, but because BBC London want to do a piece on the SCALES project and are filming us in Cranmere School. Jo Slessor is the wonderful Special Educational Needs Co-ordinator there and one of the first to sign up to the project. She has kindly agreed to speak on camera about the educational implications of language difficulties and has even persuaded a very articulate and thoughtful mum to come in with her son. A few years ago I did a Media Fellowship with the British Science Association, hoping that this would put me more at ease when speaking to the press. I spent a splendid few weeks in Dublin writing for the Irish Times, phoning scientists and chatting to them about work in progress. Unfortunately we rarely hear about work in-progress in the mainstream British press, instead we just get the headline news when results are finally published. That is why I’m so pleased the journalist from the BBC has taken an interest in our story. It takes a very long time to get the footage they need and the school staff and children are incredibly patient. I’m impressed with the journalist and how she has listened to what I said I wanted to emphasize when we spoke about it last week. Everyone is nervous, but they do a brilliant job and I am optimistic that it will be a good piece that raises awareness of language impairment (you may be able to see for yourselves – it should go out on Monday, 26 March at 6.30pm).
After filming I go back to RHUL to meet with the post-doc who is my right-hand woman on the SCALES project. We review all the hard work she’s done while I’ve been away and she adds to my long list of things to do. I realise that I will have to negotiate a few hours with my husband on Sunday to get it all done, but she has definitely lightened the load.
As I drive home exhausted on Friday, I think about all the different roles I have assumed in the week: teacher, mentor, clinician, public speaker, administrator, wife and mother. Sometimes, especially weeks like this when I’m run down and not feeling my best, I think it is all too much. It’s an impossible job with too many different strands to manage at all well. But then I reflect that this variety is actually one of the things I love most about my job. Every day is different and every day brings me into contact with fascinating people leading challenging but fascinating lives. I am never bored – my brain is always ringing with questions and ideas and this helps me to keep going when it is a bit overwhelming. And so now I look at the coming week and see that it is just as manic, but just as interesting. My cold has pretty much gone and yesterday my husband and daughter took me for afternoon tea on the rooftop terrace of the Ashmolean to celebrate Mother’s Day. Things are looking up.
Behind the scenes at SCALES 
I’ve eagerly been following your posts because I’ve never been involved in research at anywhere near this scale. Mostly I’m in awe.
But your views about the uselessness and irrelevance of autistic cognitive strengths are so representative of the dominant view (in research, practice, everywhere) I’m going to quote you in a seminar.
I’ve spent a lot of time over the years studying those many, many useless irrelevant autistic cognitive strengths. I guess you could argue this proves your point.
Hi Michelle! Thanks for your comment and I hope you’ll continue to follow the blog. I hope you also know from my body of research that I rarely hold the “dominant view” when it comes to autism – I’ve made a point of demonstrating when and why individuals with autism do not have deficits, and when some deficits frequently attributed to autism are in fact better explained by associated, or co-morbid, impairments. As a clinician (and reasonably decent person) I’m also pretty clued in to strengths, as these are extremely important for esteem, can be a great springboard for intervention and are extremely important for understanding the condition in its totality.
Here I think you’ve made a mistake that is not uncommon in the autism literature – take the findings from a small scale study of very able adult autistics and apply that to the whole spectrum of individuals. As I say in the blog, I was spending time with children probably at the opposite end of the spectrum to those most commonly included in autism research. Of course these children have strengths, but that does not negate the difficulties they are experiencing. I also did not say that their specialist knowledge was useless or irrelevant – rather I said that I did not see that it held advantages for them. Now there is no doubt that some (and perhaps many, but certainly not all) autistic individuals can hone their processing differences or specialist interests to real advantage, one that allows them to do a particular job extremely well and function independently. But for these children it really isn’t the case – the intensity of interest interferes with learning other things that might be important for future employment success, it interferes with their ability to communicate with their peers and can sometimes cause real problems at home (we could debate whether this is a problem for the individual or a problem for society, but nevertheless, the young people I saw were struggling). When I have presented my list of strengths to parents after assessing a child, they have often said ‘we know that he (or she) has a superb memory/knowledge for X, but it is of no practical benefit’. That does not mean that they do not delight in their children or recognise talents, but more that they worry about how this special knowledge or interest will be helpful to the child as they make the transition to adulthood.
One thing I didn’t say (because it wasn’t really the focus of the post) was that although not necessarily advantageous in terms of scholastic or social success, I do think there are benefits for the individual, certainly enjoyment and perhaps reduction of stress or anxiety. So I would never advocate squashing them, unless they were potentially harmful. For example, I knew two young men who had intense interests in feet and the bare skin of other people – pursuing those interests could get them into serious trouble!
I guess my main interest is in the rich variation seen in the autism spectrum and the very puzzling but fascinating combination of strength and challenge (an interest that extends to children with language disorders). My main gripe is that many people ignore this and focus on one aspect of cognition and assume that this applies to everyone, and for some people it just doesn’t. If you do quote me, I hope you’ll quote the whole story…
“Here I think you’ve made a mistake that is not uncommon in the autism literature…”
Well, no. I think *this* is a common mistake, which is to assume that if I suggest that autistic cognitive strengths exist and are important, then I must be a bad scientist and I must be speaking from total ignorance.
Apart from being informative in other ways, this is the sort of QED I mentioned above.
It’s more productive, in my view, to pay attention to available data in the literature, and notice that, for example, very good autistic outcomes remain largely unpredictable and unexplained. So do very poor autistic outcomes. Also, common ways of ranking and classifying autistics (as seen in your post and comment) are less than coherent, and create unhelpful biases. My view is that we can do better, even just by reading a lot of papers and attending to existing data. This seems better to me than deciding a priori the findings in a paper are irrelevant to “these people.”
As a writer I get to tell stories. If I was a scientist I would be a psychologist mainly using qualitative methods and…tell stories.
I’m glad that this blog is telling some of the stories behind mainly quantitative research. That seems to fill in some gaps. However, (or hurrah!) sometimes, some of those gaps will display researcher biases which might not have been as evident in the research itself.
“I just don’t see the advantages of….”
“Being able to name all the racetracks in Europe.”:
Keith works on the sports desk at his local radio station. He is affectionately nicknamed “Statto”. He can name all the winners of the Grand National since 1900, every league football ground in the country and all the racetracks in Europe. He collates the sports bulletins and his producer knows that if it comes down to a “Fact-off” between him and Google, Keith will win.
“Being able to notice and then label every tiny description on the screen when asked for a simple description”.
Louise noticed that when she used to describe everything she could see in her “Mr Men” books, her Mum would drift away from her and start watching “Coronation Street” and her best friend at school would begin playing with her Blackberry. As she got into her teens, she gradually became more attuned to other people’s reactions though she still got great pleasure from studying pictures in books. She thought Shaun Tan’s minutely detailed, surreal landscapes were amazing and could lose herself in them for hours. Her college tutor said he’d never seen anything like her own exquisite drawings and recommended her for an apprenticeship at Pixar’s U.K arm, where she was able to spot a flaw in a frame before anybody else in the office and personally prevented “Toy Story Three” from being dogged by a “Was there a ghost figure in that shot?” controversy equal to that of the film “Three Men and a Baby”.
I acknowledge the dangers of idealising or romanticising the positive traits of Autism, and the fact that you clarified that you were talking particularly about children at the “lower” end of the spectrum who are struggling . But it feels like in suggesting that papers stressing cognitive advantages of ASDs may not be useful or relevant to people struggling with the challenges of real people living real lives in society, there’s also the danger of adding to what surely is the dominant bias in research and diagnosis of stressing deficiencies and “impairments”.
Michelle picked up on your reply to me on Twitter, where I said I’d been able to make a living from my cognitive strengths and special interests- and you replied “If only every child with Autism could do that”. I mainly interact with adults with ASDs- though there’s a sort of selection bias there in that it tends to be the many thousands who eloquently tell their stories online. The ones who struggle in less obvious ways, but also have had enough years to live through the “Developmental” bit of a developmental disorder. Obviously, when I was a child I couldn’t make a living from my special interests, though some of them certainly helped see me through difficulties at school. The “Racetracks” comment stuck a particular chord because my twin brother was much, much less verbal then me, but was fascinated by sports knowledge and I wish he’d been encouraged to build on his strengths rather than made to doubt that his skills had any “practical benefit”.
As an Autism researcher, Michelle has a far better overview than a layperson like me of the studies and I was glad she was able to respond to the suggestion that her own position is based on generalising a small scale study of able adults to the whole spectrum.
Thank you for sharing these stories. They are very inspiring and a great reminder that many individuals can use their specialist interests and knowledge to great practical advantage. Not everyone has this experience though. We may not hear from them as much because real limitations in language and literacy make it difficult to express their views so eloquently. But their views are valid nonetheless.
The point I was trying to make, which seems to have got a bit lost here, is that all researchers (myself included) need to spend a bit more time reflecting on how performance, in any direction, on a highly artificial psychology experiment has any bearing on the everyday lives of the people participating in those experiments. What difference does ‘enhanced’ performance on a perceptual load task, or ‘reduced’ fixations to eyes when presented with a whole load of Ekman faces actually make? Does performance actually predict school success, ability to get a job or live independently, job satisfaction or improved quality of life, increased/descreased anxiety or stress? To my mind this sort of information would be far more helpful that the experimental findings themselves in supporting all individuals with autism (or any other developmental condition) to realise their potential.
This meta-study suggests that making an effort and curiosity, taken together, rival the role of intelligence, as predictors of school performance. I guess there is other research on the relationship between formal education and formal types of employment.
“The researchers performed a meta-analysis, gathering the data from about 200 studies with a total of about 50,000 students. They found that curiosity did, indeed, influence academic performance. In fact, it had quite a large effect, about the same as conscientiousness. When put together, conscientiousness and curiosity had as big an effect on performance as intelligence.” (1)
Therefore, if the relationship between abilities on test performances and social-economic outcomes is the focus of a research interest, these things can be studied so that there is data which then can be discussed.
(1) http://www.psychologicalscience.org/index.php/news/releases/curiosity-doesnt-kill-the-student.html