Well, almost a month since the last post on this page, and that was a guest blogger (thanks, Michelle!) so I don’t have a leg to stand on.
I’ve been incredibly busy lately – evidently – and one of my big jobs has been the setting up of a room in which most of my trial participants will have their opening and final assessments. These assessments mark the start and end of each family’s participation in our trial, and also provide the basis for the primary outcome measure. This is the measure that will give us the bottom line on whether our app has been beneficial to the children taking part in the research, or not.
The assessments taking place in this room should mostly feel like games for the child taking part. One of them is an ADOS (autism diagnostic observation schedule) which is essentially a series of structured games which you play with a child with autism, and which are designed to bring out features of the disorder so that they can be scored. From the child’s point of view, they get to play with some bricks and cars, pop bubbles and hold a pretend birthday party for a doll, while a strange lady takes notes! I’ll also be running something called the Mullen Scales of Early Learning, which is a childhood ability measure. This is a bit more like a test. For example, I might ask the child to match two pictures which are the same, or to build a tower using some stacking cups. But nothing too stressful I hope.
Even though the assessments have been selected to be fun, there are other reasons why a child with autism might be uncomfortable during the assessment. The room won’t be familiar and nor will I. To counteract this, I’m sending all the participating families some pictures of me, the building, the room, the toys and so on. So they can show their child in advance a little of what to expect. Another concern is break time. I’ve got a few different things we can do for a break from the assessments, designed to be a change and a rest for the kids. For example, I’ve found a nearby outdoor space for running around, though unfortunately it isn’t grass. I’ll have some favourite TV programmes cued-up on iPlayer, and I’ve bought some sensory relaxation toys too – like a fibre optic light and some squishy balls. However, if I’m too successful in break time, we might struggle to move back into the assessments. For that reason I’ve also got a little egg timer, so the children can see how long they have before we need to move on.
There’s been lots of other planning too: what snacks and drinks to offer children? what about parents? I know from my own kids that if Mummy has a delicious chocolate biscuit and wee Jenny just gets a Rich Tea there’ll be trouble! What about decor – too little and the room looks sterile and unwelcoming, too much and the children might feel overloaded. I’ve had to arrange nappy changing facilities (not normally available in the University work place!) and make sure the lighting in the assessment room is not flourescent as well.
In all of this I’ve had the absolutely invaluable help of a series of parents and professionals who have been very generous with their time and expertise, and who’d I like to thank here – they know who they are! It has been hard work getting ready, but I think we’re as prepared as we can be. I’m doing a couple of test runs with typically-developing toddlers over the next fortnight. Then some formal ‘dry runs’ with children with autism who are just a tiny bit too old for the main study, starting in late March. And then the very first trial participants are booked to come in in late April! Very exciting!