Kate E. Reynolds

  • Where's your evidence?

    One of the most difficult aspects of helping my son when he was first diagnosed was working out which of the plethora of approaches was best to use. The absence of any real guidance from professionals, aside from ’look on the internet’ or ‘really, it’s up to you, as his mother’, seemed to put me in the driving seat. In reality, it placed responsibility onto me, without supporting this with any tangible advice. I was in the driver’s seat without a map or satnav.

    I scoured all possible sources of information, some of which balanced one therapeutic approach against another, such as The National Autistic Society. However, there was no real sense of which approach worked better than another; the ‘balance’ only served to leave me directionless.

    I consider the US system of health insurance as a nightmare for anyone with a chronic condition. Autism websites are full of hellish stories about families who are unable to afford anything from diagnosis to ongoing care and support for their autistic offspring. Because of the reliance on insurance, though, any therapies that parents/caregivers adopt, are expected to be evidence-based. In other words, they must show tangible results to justify funding. An interesting part of the Beijing conference was when American presenters talked about Applied Behavioural Analysis (ABA) as being the only therapeutic approach that was proven to work. They applied a scientific approach to demonstrating its feasibility, using baseline assessments, applying the approach, then reassessing. This continuous process of reassessment and evaluation was necessary for insurance funding but also serves as a lesson for other approaches.

    It took some months for me to work out that play-based approaches were what appeared to work best for my son. The Son-Rise program (www.autismtreatmentcenter.org) seemed to offer one approach that suited both my son and me. At it core was the relationship between the autistic child and others in the social world. There wasn’t the emphasis on academic learning, often by rote, which other therapeutic approaches had. I listened to Raun Kaufman give a lecture at the University of Bristol about Son-Rise. His parents were told he had severe autism and likely should be institutionalised. This, of course, resonated with me, as I was told the same about my son. His parents resisted this option and instead his mother worked with him, using what was a pioneering approach which they named ‘joining’. This was a process of mirroring their son’s behaviours. Put simply, the idea was to join him in his self-imposed world, develop a relationship, then they used a variety of techniques to draw him into the wider social world. These techniques underpin the Son-Rise program.

    Part of the concept was to give positive feedback to the child. Instead of the negativity which surrounded the most prevalent approach at the time of ABA, the Son-Rise idea was to reassure the child that he/she was fundamentally ‘ok’ as a person. I loved the example he gave of a man sitting on a park bench being approached by another person, who wants the first man to go to the cinema. Ie the goal is to move him on to another place. The ‘mover’ has choices. He can demand that the man on the bench goes to the cinema. He can physically drag the bench occupier to the cinema. What he chooses to do is meet the man each day on the bench, gradually introducing conversation, all based on what the park bench man presents with, such as commenting on his book or sandwiches. So the bench man is pivotal to the interaction. Eventually the mover makes a link between the book the bench man’s reading and a film at the cinema. He then suggests they attend the cinema together to see the movie. Bench man agrees. The process involved developing a relationship, therefore took much longer than dragging him there. But the end result was the same; the bench man ‘moved’ to the cinema. The difference was that they developed an understanding, a relationship, on which to develop.

    Of course, the reputation of ABA as a therapy has improved from the early days of the 1960s when it involved using what many observers saw as punitive measurements for children who didn’t follow the ABA program correctly. Physical punishment was believed to be an effective way of altering and normalising behaviours. (I’ll blog about ABA another day, giving a more balanced, modern perspective.) Some of the criticism remains that most play-based approaches are child-led and have developing relationships at their core. Long term, this is believed to enhance self-esteem and the possibility of the child ‘truly’ becoming part of the social world instead of learning stock phrases or other rote learning about social situations.

    The problem for play-based therapies is a lack of evidence as to their effectiveness. In a country where health care is covered by insurance, such as the US, insurance companies will insist on proof before they commit to funding. In the UK, where a socialised system of healthcare and education exists (free to all at the point of need) there is still a need for proof to persuade a local authority to fund anything other than the standard TEACCH approach available in schools.

    Simply feeling that a therapeutic approach works for a child isn’t enough. As parents, we feel the pressure to help our children. Many of us are aware that all the evidence points to early intervention as being the key to optimising our children’s life chances. Yet there is little guidance and full responsibility for us to act. A more scientific approach, giving us a solid framework as to how to assess how or if our children are developing under a particular therapy, would give us something tangible. This isn’t necessary just for funding. We need to feel that our efforts, usually giving tirelessly and over many years, are going to bear fruit. Or, if they’re not, we can work this out at an early stage and try another approach. If there’s one thing play-based approaches could do to enable parents, it is to engage in some rigorous research into the effectiveness of their therapies.

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Kate E Reynolds - blogging

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