Pivotal Response Treatment is the best way to teach autistic children to speak. So why has no one in the UK heard of it? Asks Alex Manson-Smith.
When my then two-year-old son was diagnosed with autism in May, part of me expected a crack team of medics to swoop in with options and treatment plans, and ideas for how we were going to Beat This Thing. So it was kind of a shock to find that none of that happened. I was told that there was no treatment, and no cure, and that children with autism become adults with autism.
Our son had no vocabulary at all beyond ‘hi’ and ‘bye’ and the statistics weren’t exactly encouraging. According to WebMD, 40% of autistic children never learn to speak. Meanwhile, the National Autistic Society will tell you that some 40% have a learning disability, while 85% will never hold down a full-time job. It’s unfair to say that the NHS offered us nothing – we were provided with some speech-therapy sessions, and I was told I could join a waiting list for a parenting course (I’m still on it). But beyond that, we were on our own.
So my husband and I got online, where we discovered all sorts of people hawking miracle cures and fix-its. Some were scary (fancy having your child injected with ethylene diamine tetra-acetic acid to remove the heavy metals from his blood? There’s no shortage of people who’ll do it for you.) Others were plain crazy (give him camel’s milk and he’ll be fine!) None were backed by science; all were expensive. Maybe the NHS is right and there’s nothing we can do, we thought.
But then we came across behavioural therapies. The best known and most widely used of these is ABA (Applied Behaviour Analysis). Created by Dr Ole Ivar Lovaas in the early 1960s, ABA aims to teach autistic children to communicate by breaking down skills into small, structured tasks. Children receive rewards, such as raisins, to reinforce ‘good’ behaviour. Many have seen their lives transformed as a result.
But it’s no easy ride. According to the Lovaas Institute, for ABA to be fully effective, children need to be doing 40 hours of it per week. This must be administered by trained professionals who charge £25-£50 per hour. And being private, it’s unregulated, which means that these professionals could basically be anybody. There’s no mandatory qualification, and no regulatory body they have to answer to.
It isn’t even the most effective intervention out there. After more research, we came across Pivotal Response Treatment, a more evolved, child-led form of ABA. Developed by Drs Robert and Lynn Koegel at UC Santa Barbara, PRT targets pivotal areas of a child’s development. This improves their communication and social skills, as well as their behaviour.
‘What PRT does is to incorporate the child’s motivation,’ says Dr Lynn Koegel. Put in the simplest terms, this means finding what the child likes and working with that. So if a child likes being pushed on a swing, he doesn’t get a push until he says ‘swing’. It uses natural reinforcers – so if the child says ‘baa’ for ball, he gets the ball, rather than a raisin or cookie. It’s simple, yet stunningly effective.
‘When we started out, about 50% of autistic children were non-verbal,’ says Dr Koegel. ‘But once we developed PRT, we found that if we started before the age of 3, 95% became verbal. If we start between 3 and 5, then 85-95% become verbal.’ As she puts it, ‘that’s a lot higher than the 50% we were talking about in the past.’
And PRT doesn’t need to be administered by some stranger charging £50 an hour – a parent or nanny can do it. Better still, unlike many autism interventions, it’s backed by hard evidence. In fact it’s one of the most well-researched interventions out there. There are hundreds of studies and peer-reviewed articles vouching for its efficacy. In the US, it’s listed by the National Research Council as one of the 10 model programmes for autism. Over there it’s also recognised by the National Professional Development Center on Autism Spectrum Disorders and the National Standards Project.
Unsurprisingly, we were eager to sign up. But there was a downside: there is one person in the UK who’s qualified to supervise PRT programmes – and she’s based in Scotland (we’re in London).
Dr Ruth Glynne-Owen runs Speur-Ghlan, a charity based outside Stirling, which offers PRT to children with autism and other developmental delays. She has an MA and a doctorate in autism, and has been working with children on the spectrum for 15 years. ‘Of all of the approaches I know about, PRT has the best results for children in terms of developing their spoken language,’ she says.
Certainly she’s seen some amazing transformations in the children she’s worked with. ‘A lot of children I’ve seen have had absolutely no speech at the beginning, and then in three or four years’ time they’re fully conversational kids who are in mainstream education with no support,’ she says. But there are no miracles, she cautions. ‘I don’t think any genuine professional can make promises because it’s very dependent on the child, the family and so many different factors,’ she says.
But, given how effective it is, it seems odd that PRT hasn’t caught on over here. Glynne-Owen thinks that there are two reasons for this. One is that the Koegels have been focused on researching and establishing the therapy in the US, rather than selling it. ‘PRT’s quite unknown because, although it’s got a huge amount of evidence behind it, it’s not an approach that’s been very well marketed outside the US,’ she says.
It also lacks the support of the NHS. Certainly the professionals we’ve come across – from the GP, to the paediatrician, occupational therapist and speech therapist – had never heard of it. I found this pretty shocking, but Koegel wasn’t surprised. ‘There are so many medical doctors who don’t know that there are good interventions out there and it means that families are missing out,’ she says.
But it isn’t just ignorance that’s stopping families from accessing PRT for free on the NHS. ‘PRT is an ABA approach, and there’s a lot of dislike of ABA within the NHS,’ says Glynne-Owen. ‘The NHS has very set ways of doing things and they have two very specific approaches that they’ve bought into that aren’t particularly expensive and don’t need a huge amount of human effort. So they use Picture Exchange Communication System [PECS] and TEACCH. But these don’t actually have the same evidence base as most of the behavioural interventions,’ she says.
So how costly would it be for the NHS to bring in PRT? ‘Actually it wouldn’t be expensive at all,’ says Glynne-Owen. ‘PRT has a massive focus on parent-led intervention, which means that it’s not expensive to implement. The charity I run in Scotland isn’t expensive to run. Children don’t come for hours and hours of therapy, because we’re training parents, and once parents know the theory behind it, they’re then able to implement it at home.’
In fact, there’s an argument that it could save money. ‘If the NHS were to adopt it, it would probably be a heck of a lot cheaper than what they’re spending on speech therapy,’ she says.
As it turns out, Ruth’s being in Scotland wasn’t a barrier to us starting a PRT programme. She has many clients in London and flies down to see us once a month, while our nanny implements the treatment at home. And between visits we do a lot of email and Skype.
Since starting the programme in April we’ve seen tangible results – everybody comments on how much our son has come along. He now speaks in short sentences; the tantrums and head-banging have eased off; he’s proving to be really good at puzzles.
But I don’t want to sound hubristic. He’s just turned three and I’d be lying if I said that, developmentally, he was where he should be. His speech and understanding still lag way behind those of his typically developing peers. But he’s already far beyond where he would be had we followed the NHS’s approach and done nothing at all.
It needs to be said that all autistic children are different, and that what works for one won’t necessarily work for another. But for autistic pre-schoolers who are struggling to communicate, PRT has got to be worth a shot. As Glynne-Owen says, ‘It’s not rocket science, but it does have really strong science behind it.’