Wednesday, 2 May 2012

'You know what boys are like' and the autism pre-diagnostic experience

"Slugs and snails, And puppy dog tails" is apparently a good description of the young male. Slightly less appealing in comparison to "Sugar and spice, And all things nice" for young ladies.

I'm not necessarily one for sweeping generalisations about gender, particularly on the back of interesting discussions like this one as part of the Cordelia Fine vs. Simon Baron-Cohen academic MTV Celebrity Deathmatch. That being said, there are some generalities about development between the sexes which seem to crop up time and time again.

So it was with this paper by Ryan & Salisbury* and their research piece titled: 'You know what boys are like': pre-diagnosis experiences of parents of children with autism spectrum conditions. I was drawn to comment on this paper for quite a few reasons outside of just the quote in the title. This was a qualitative paper looking at the pre-diagnosis experiences of 24 UK parents of children who were subsequently diagnosed with an autism spectrum condition. The aim was to look at how contact with primary care health professionals such as general practitioners, GPs, might be improved for parents and their children.

The results are interesting bearing in mind the small participant group:

  • Three groups of parents emerged from the semi-structured interviews undertaken: (i) parents who noted no issues with their child's development before a diagnosis was suggested and received, (ii) parents who had seen something a little bit different in their children but nothing that warranted communication with health care professionals (labelled 'passive concern') and (iii) parents who saw something in their child's development and spoke up about it (labelled 'active concern').
  • Where parents showed passive concern, one of the primary reasons for not raising the issue with their GP or related medical type, was the inability to put their finger on precisely what was 'not right' with their child's development.
  • Where parents showed active concern which led them to expressing some opinion to a healthcare professional, a degree of being 'fobbed off' (they call it 'prematurely reassured') seems to have been evident among at least some health care professionals; hence the title "you know what boys are like".
  • The final sentence of the abstract is also an interesting one: "Parents may be the best resource in identifying ASC".

A few things struck me about this latest research. 

Whilst this was a qualitative study, something which the BJGP seem to publish quite a lot of, this is a fascinating insight into the whole medical / lay relationship when it comes to child development and expressions of parental concern. As any child development expert / parent will tell you, kids don't generally develop in a single, standardised, uniform way precisely as per the various developmental milestone books, but rather with lots of stopping and starting of new and existing skills. Although reluctant to use the word 'bloomers' in this context, some children seem to do everything really quickly, others can be content to just let the world and its skills come to them. Such is the heterogeneity of child development.

The active concern group and the reports of premature reassurance highlighted in this paper are however a point of real concern. There is an old adage in medicine circles: when in doubt, examine the patient. I'd like to think that now at least here in the UK, with the guidance from NICE on pathways to diagnosis (see here for full document), and the realisation that parental opinions can be a very accurate source of information about their child (remember this study on bowel symptoms and autism?), less premature reassurance and more focus on testing assumptions will be forthcoming. Not least because of how, when such situations occur, they can cloud what will be a fairly vital relationship between patient (or patients parents) and physician once a diagnosis is given.

Probably the most important thing revealed in this latest research is the continued state of 'not-knowing' when it comes to autism onset and the sole reliance on observation and developmental history for the screening and assessment of autism. It's been mentioned more than once on this blog, how despite various screening instruments, there is (a) currently no objective measure of autism, and (b) the time taken from developmental concern to getting a diagnosis is often quite a long period of time. Obviously a degree of 'wait and see' is to be expected given the very important requirements to make diagnoses as accurate as possible, taking other differential diagnoses and comorbidities into consideration and reducing the possibility of 'false-positive' results, particularly with the emergence of research suggesting that autism might not necessarily be as 'fixed' as was originally thought (here).

But all that needs to be balanced against things like the growing body of evidence on the impact of early intervention in cases of autism.

To finish, for any persons with the surname 'Shufflebottom', you might be interested to read that Shufflebottoms are not necessarily any more likely to bottom shufflers as toddlers. Please file under 'eh?'

* Ryan S. & Salisbury H. 'You know what boys are like': pre-diagnosis experiences of parents of children with autism spectrum conditions. British Journal of General Practice. 2012; 62: 378-383