Many people have asked me why I am so obsessed with evidence. They say that the views and experience of parents/teachers etc are more important than the view of experts who always insist on checking everything. And they often say ‘what’s the harm, just try it and see’.
The ‘it’ they’re talking about changes every year or so. It might be fidget spinners, weighted blankets, special diets, supplements (the precise supplement has changed over the decades with fashion but some sort or other has been around for a long time). Or it might be their experience about how vaccines harmed their child and caused their autism (yes that theory is very much alive and kicking). Because if something happens at the same time as something else it must have been caused by it right? Eye roll.
This is of course rubbish. Why is it rubbish?
Let me tell you about one such story.
Not too long ago a new ‘theory’ hit the autism world by storm. A new technique. It was called Facilitated Communication. It had a laudable background. The idea was that all autistic people should be presumed competent. That even though they may not be able to speak (please note this was before iPads and proloquo2go) or react to simple instructions, even very severely affected children understood everything that was said to them. They just had no way of controlling their body enough to respond.
It was a lovely idea. Everyone that is autistic has a normal IQ, or a high IQ, they are just locked into their body and unable to show us how smart they are. How many parents wouldn’t want to believe something like that? it is an idea still often spread by memes (because if it’s written in a meme it must be true right?).
Facilitated Communication (FC)
So they came up with a technique. An autistic child (usually) would sit down next to a facilitator. A keyboard was placed in front of them. The facilitator would lightly touch the child on the shoulder/arm and ask them questions. Over time, developing their relationship (it was all about the relationship you see), and trusting that the child always understood everything they said, the facilitator would help the child ‘speak’ an answer on the keyboard.
Does this sound a bit like a Ouija board to anyone else? And yet people truly believed this worked. Not just some of the time. 100% of the time with all children. As long as the facilitator was a ‘good’ facilitator and as long as you had ‘faith’ that it would work. Strangely children would have completely inconsistent results across different facilitators, often weren’t looking at the keyboards as they ‘wrote’ on them, and commonly couldn’t get much of a result with their own parents.
It became so popular within just a couple of years there were university courses in it. The experts kept saying something about lack of evidence, but people ‘saw’ their kids communicating with them and ‘experienced’ how well it worked. It was rolled out all over America. Lots of special ed departments and schools used it. Lots of autistic people and autism advocates praised it. Plus, it wasn’t doing any harm right?
The harm begins
Wrong. Because that’s when the sexual abuse trials started. Over and over the children would start to accuse their own parents and even siblings of serious sexual abuse. And parents who loved this new way of communicating with their kids would get very confused as to why they were saying these things about them. Even the facilitators were confused. They were special education teachers who loved these children and wanted to help them. They were sometimes heartbroken at the stories coming out of them, so similar to the main news stories of the day about abusive childcare workers.
But of course when you have a trial in a court of law you have to suddenly prove things. And so an expert finally looked, publicly, at this method. He would show a flashcard with an object to a facilitator and a flashcard with a different object to the child. Over and over. Or the facilitator would leave the room, and the expert would show something to the child. And see what the child ‘wrote’ on the keyboard. Every time it was the object that the facilitator had seen, not the child. Over and over the experts showed that the whole program was nothing more than wishful thinking.
Parents often prefer a feel good lie to a harsh truth
One of the parents that was on trial for sexual abuse of their child spent three months in prison during the trial, some of the time in total isolation (to protect him from the other prisoners). After the trial he said that even though the method was rubbish, it was worth going through the ordeal of the trial and incarceration because he spent several precious months thinking that his daughter was really ‘speaking’ to him. They had tried PECS, they had tried every evidence based method, it hadn’t worked. And he was grateful for this short time feeling like he had found a connection. Even though of course it was total rubbish.
This all highlights the problems with autism therapies. Many, many of them are feel good nonsense. Often they just take an activity or animal people like (horses, dolphins) and attach the word therapy after it. And parents bite. They see an improvement, because of how much they want to. If their child has a high IQ, the child will be told ‘try this weighted blanket, it will help you sleep at night’. They will then try it and say ‘yes it was great mum it worked I slept better’. The placebo effect can be extremely high with ‘high functioning’ children, anything up to 70%. When a study compares their actual sleep with vs without a weighted blanket, it is no better. But who wants facts when they can have a comforting, warm, feel-good fiction?
Real therapy is time consuming and expensive. But it works.
The problem is that the real therapies, the ones that have been shown to work and improve skills, work so slowly. They take so long. They are so repetitive, so incremental, and so expensive.
But it’s important to block them out. Partially, because they are a drain on resources. You can’t afford everything! Partially, because they can do real harm. And mostly because it means you aren’t doing something else, that could actually help. Something that could improve IQ and adaptive skills three or four times more than a placebo, as tested and replicated many times over.
It doesn’t give you that warm glow you would get from your child suddenly writing advanced poetry at the age of eight. It isn’t as pleasant as just going swimming with dolphins a few times. But it is real, and it is lasting, and will not involve you having to go to hospital or prison as a direct result of your ‘therapy’. Or even just having four times less adaptive skills than they might have.
Experience is still important
Does this mean experiences of parents or autistic people are irrelevant and should be ignored? No way! They provide the most interesting avenues to be explored. They provide topics that should definitely be researched. You think that going on a particular swing or spending time around music makes you calmer and better able to concentrate? Let’s test it. Let’s measure it. Let’s see if it can be replicated with other people. And if it works, if it isn’t just bias or a placebo, let’s share it with the world.
And remember the people that spread facilitated communication were not villains. They were really nice people totally committed to the children under their care. Just not overly skeptical people. And sometimes, especially as parents, a healthy dose of skepticism can be our most important weapon.