As described in this previous post, my recently-completed Click-East project was wrapped up with a tea party for families who took part. As well sharing our findings and just generally getting together for a natter, the tea party was a chance for me to find out what these parents felt should be a priority for research in the future.
So this post is a quick summary of some of the research questions the parents highlighted and in each case links to actual research going on in this area. What I think is really exciting about this process is the discovery that many of the concerns being raised by the families are also priority issues for the research community. I’m really heartened by this evidence that academics are not living up to the ivory tower stereotype and are genuinely engaging in research which is relevant to the community.
“ Language development – games to help develop language” and “something to help develop speech” and “any research targeted at helping bring the words out for children with autism who seem to be trying to speak but giving up easily”
Language delays are obviously a really significant part of autism and probably present the single biggest challenge to parents. Raising a child without language makes almost every aspect of life and development just that little bit more difficult. The first issue for researchers is to better understand the linkages and separations between autism symptoms and language delays. Why do some profoundly autistic children develop good speech while others, even with much milder social difficulties, are very delayed in language. Courtenay Norbury is really leading the field in this kind of research and you can see more at the LiLaC website.
For technology enthusiasts, there’s also some evidence coming out of the States on the efficacy of augmented and alternative communication (AAC) apps on the iPad as a way to support communication development. However before you rush out and buy one of these, please do have a look at my reservations. The evidence is still preliminary and the effects of learning language from an iPad is poorly understood. However, if you have an iPad already and want to try AAC with your child without forking out £200, the best app I have seen so far is Avaz which retails at £69.99 – much cheaper than most AAC apps though still pricey. I’m also about to do a proper review of a new kind of AAC app, called aacorn which seems very exciting – if you’re interested have a look at this review by parent and technology professional Melissa Morgenlander.
In the same sphere, a couple of parents were curious about idiosyncracies in their child’s language style:
“Why do autistic children speak in the third person so frequently?” and “My son finds it difficult to understand the difference between she and he but understands the difference between girl and boy perfectly – why is this?”
This is a well established feature of autism but is poorly understood. Take a look at this researcher blog post which summarises some of the theories about this unusual use of language.
“How can we help children with autism make friends more easily” and “Interaction – happy to play on the iPad alone – would like to play together”
There are a number of evidence-based intervention approaches specifically designed to help children with autism develop the skills necessary to make friends. For example the Circle of Friends approach, which uses trained peer supporters to help children with additional support needs who are in mainstream schools. The Secret Agent Society combines group work, parent training and ‘a computer game to help children develop friendship skills. Both of these approaches are grounded on good research evidence and are starting to be used more widely. A separate issue is encouraging children with autism to be motivated to make friends. Many children are sociable and would like to be able to play with others but there is also evidence that some autistic kids (just like all of us) prefer to be loners and are content with that.
“Maybe research into the effects of diet on autism” and “Does food have an affect on autistic behaviours?”
This is an area which is long overdue for further study. The best theoretical model we have at the moment is that there is probably a sub-set of children with autism with gut problems who benefit from a specific diet. The reason this seems effective to parents is that the child, who was previously very uncomfortable due to these digestive problems, becomes much more happy and relaxed and this puts them in a frame of mind to interact and learn. However there is no theoretical model (of which I’m aware) which indicates that diet should have a direct effect on the core symptoms used to identify autism. One of the really challenging goals to investigating dietary effects on autism is designing gluten and casein (wheat and dairy) free foods which the children will eat and which the parents can’t guess are not normal foods. A team at Newcastle University have developed foods like this and have conducted a study of the attitudes of professionals towards this kind of intervention – both pieces of research provide foundations for a large randomized controlled trial. I’ll make sure I update the blog when there’s more news on this.
For independent overviews of research evidence for any intervention, including gluten-free, casein-free diets the Research Autism website is hard to beat. I would always recommend checking their summaries of evidence when considering any new therapeutic approach.
Everyday challenges and social stories
Difficult behaviour – how to improve parent’s understanding of it. How much do parents know how to deal with meltdowns? and “An app that could demonstrate social situations so that autistic kids can understand i.e. parties, birthdays christmas shopping” and “Develop a social story app. Where one can load up images (photos) and the child can confirm how he felt about it – for example when choosing a new bike “we’ve seen 1, 2, 3, bikes and I like this one”
Meltdowns and tantrums can be extremely hard to deal with and unfortiunately this is a case where prevention is probably better than cure (but also extremely hard to achieve). The use of Social Stories is a reliable way to help children understand routines, rehearse new experiences before they happen, or learn to deal with upsetting situations. Carol Gray developed the approach and there is plenty of case-study evidence showing that these can be effective – though no really strong trials yet. This is an area where technology can really help – there are some excellent Social Story apps. My favourite is StoryMaker which includes tutorials and lots of resources, but OurStory is free and can also be used to make social stories, especially if the user os ocnfident about what they’re doing. It is also available for Android as well as Apple devices. Choiceworks is another app which is especially useful for creating timetables for regular routines.
Turning Research into Practice and Policy
More and more now, there is an emphasis among the academic community on linking research in to policy and practice recommendations. Two examples of this activity are the ongoing Action on Autism Research seminar series in Scotland and the Autism Research Policy Practice Hubbeing pioneered by researchers in Cardiff but with relevance across the UK and beyond. Finally, if you’re interested in learning more about how the concerns of the autism community are being met (or otherwise) by research, check out A Future Made Together – a recent report from the London-based Centre for Research in Autism & Education, or this report from Autisticacalled One in A Hundred.