Tickling in the name of science

My Little Pwdin is just back from school. Unlike millions of others I’m rather fond of Mondays. It’s the day I get to do a lot of writing, hoover up all the yummy stuff left over from the weekend and, if I need to, catch up on a bit of sleep. I needed to today. I’ve still got a bit of a sniffle and a temperature and the exceptionally warm October we’ve been having hasn’t suited me at all – nor Pwd for that matter. Hubby, on the other hand, has been loving it and taking the opportunity to commute by bike. For you poor souls not fortunate enough to live in Wales let me tell you the weather has been tropical! Today, though it’s rather more grey and autumnal.

Another reason Monday is fast becoming a favourite is that Pwdin, after only one day at school comes home in fantastically good spirits and usually with goodies for his adoring Mammy. Today was pizza with lovely thick slices of fresh tomato – NamNam! Right now he is running back and forth in front of the patio window with one sock off and no shoes on giggling as he goes. KaBoom sprinting along behind him in hot pursuit.

Mostly, Pwd is happy boy full of laughter and kisses but when his mood takes a turn, all hell breaks loose. Happy Pwd runs lap after lap of the garden, the living room, his bedroom – wherever he may be in fact. Angry or upset Pwd does the same but with a frightening ferocity. He holds his arms back and sticks his chest out as though, at each lap, he were an athlete pushing to be the one to break the finishing tape. However, the aim of this is to impact with the wall/fence/door at the end of each lap with his chest with as great a force as he can muster. He hasn’t seriously hurt himself yet but it terrifies me every time he does it.

The laps, along with other behaviour such as flicking books and catalogues in front of his face are being monitored closely. We’re keeping a diary recording the number of instances these occur on a daily basis. The data will be used in a study being carried out by the Wales Autism Research Centre. As part of this we go to Cardiff university every week and Pwd is observed by psychologists through a two way mirror as he does battle with the tickle bug – one of the researchers tickling him and otherwise trying to engage him in play. That he enjoys himslelf is a huge understatement. If I were to be objective about it I can say there is evidence that the experimenters too have a lovely time when Pwd comes to visit.

For me, getting involved in research is important for a number of reasons. I have the opportunity to discuss his behaviour, progress and regressions with a team of excellent psychologists with specialist knowledge of autism. It also helps keep me up to date with research which, of course, is great for this blog. Most importantly though, it may help shape services and therapies for people with autism.

As a mam of an autistot and staunchly pro-vaccine I am dismayed at how much money, expertise and, most sadly, time has been expended on the non existant autism-vaccine link. And why? because of a fraudulent paper by a man more concerned with being idolised than conducting good science or the health of his subjects, autistic children and all children in general – Andrew Wakefield. Knowing my position on these issues I’ve been accused of holding or assumed to hold a lot of views that, actually, I do not. Although I believe that autism is, primarily genetic in cause I don’t think there will be, nor would I want there to be a pre-natal screening test for it. Nor am I, by enrolling my boy in research studies a believer in finding a cure for autism. However, I am keen that therapies and strategies can be developed to help autistic people overcome the disabling elements of the condition that many experience such as the inability to communicate.

Many of the approaches and techniques that have worked for us have come mainly from our old occupational therapist. Without exception, each that has met with success has meant Hubby and I changing the way we do things and really trying to see things from Pwd’s point of view. Perhaps the most dramatic example of improvement was seen in his biting habits.

Pwd has always been a cwtchy little bear. He’d often get a bit over excited or want to be extra close or tight and that would end in a great big bite. It was nearly always me that got bitten and over time this behaviour changed to become a greeting, replace cuddling and generally just what my little Pwdin did to mammy. All the advice we got boiled down to the same thing: he’s naughty, the behaviour is unacceptable and there must be consequences. In other words, all those offering advice determined that Pwdin was biting because of a lack of my parenting ability. What consequences could you give, other than physically brutal ones, to a child who is happy to spend time alone, will not/cannot sit still even on a ‘naughty step’ and with whom you cannot communicate that these acts of biting constitute inappropriate behaviour? He didn’t even understand that my howling in pain was a bad thing. I would have to squeeze his nose until he was forced to take a breath through his mouth to get him to release whichever piece of flesh he had in his jaws.

The breakthrough finally came on the first visit from our OT. She observed the behaviour and calmly suggested stimulating his mouth every time he attempted to bite or after biting if I didn’t catch him in time. This involved tapping and blowing raspberries on his cheeks, pulling his mouth into funny faces and squishy fishy faces. It worked. Apart from the few times I missed the signs the biting stopped almost overnight. He would still clamber all over me (and still does – this second in fact, covered in who knows what from the garden) but instead of biting will press his cheeks hard against mine or take my hand, place it on his face asking for fishy squishes. He even developed a bit of a thing for me scratching his tongue with my long nails (ick- but he loves it!). Unfortunately I can’t say he never bites anymore but the behaviour has changed its meaning. He will now bite in anger or frustration but fairly infrequently.

True not all interventions have their effect so quickly or even at all. There is no quick fix to help him communicate and thus overcome the frustration that manifests itself in his terrifying laps. The prescriptive “we’ll do PECS cos that’s what we do with autistic kids,” that came from his speech therapist hit the brick wall of Pwd’s stubborn nature every time (well the two sessions he actually got in two and a half years!) and yet no adaptation or rethink was attempted. To be honest he has had effectively no real speech therapy. Most appointments we went to involved plenty of speech -the therapist saying we were going to try PECS again and us wondering out loud if any sessions to implement it would materialise this time.

Now he’s in special school he’ll be getting speech therapy and OT as part of his routine and as long as he still has time to make his mammy pizzas and gingerbread men, that’s just fine with me.