Apologies in advance to anyone anticipating the usual mix of waffle, rant and, hem-hem, “humour”. Today’s blog falls more into the category of ‘getting it off my chest”, and is a bit long-winded too at almost 2000 words. If you have no interest in the subject of autism then this is not the post for you and feel free to just pass on by. I’ll try to remember to post something a bit lighter tomorrow to make up for it – probably in the “Hackenthorpe Book of Lies” section.
For those who might be interested:
As the parent of an autistic child I am increasingly worried by the number of ‘woo’ therapies and interventions being promoted these days as alternatives to good, old fashioned, sensible parenting. The best of them at least encourage aspects of sensible parenting along with the rubbish elements, but can cost thousands of pounds and hundreds of hours only to take all credit away from the children and sensible parents whose combined efforts have actually achieved the results.
The worst kinds of therapies and interventions can, IMO, actually do harm, both physically and psychologically, to parents and children alike, further disabling autistic children by enabling dependencies and accommodating potentially manageable antisocial behaviours in ways that work to further isolate the child from the real world. Other therapies seek to ‘normalise’ children by forcing them to adhere to rigid medical models of neurotypical excellence that are often wholly inappropriate or unsustainable for autistic people. Watch a video of a DAN rally ‘stage parade’ if you want to see normalisation in action.
Of course there are many things that can help autistic people – PECS, for example, is a great communication tool for those who haven’t developed language or need to augment their speech – but even useful tools like this need to be used with caution lest the means to social communication become a strategy for social withdrawal. When used properly the benefits of something like PECS can be clearly seen, but sadly for every PECS there seem to be half a dozen alternative interventions where people claim evidence of a connection between strategy and outcome that is wildly subjective to say the very least.
I’m not going to write about any specific intervention here because there are far too many to cover, but the following can be generally applied to most of them…
If I, as the parent of an autistic child, came up with the idea of, say, ‘eating chips therapy’, and gave my son lots of chips to eat I could perceive ‘results’ that actually weren’t there purely and simply because I was looking for and anticipating results. I could, also, unconsciously (or even consciously, as part of the ‘treatment’) modify my own behaviours in ways that were conducive to the emergence of new behaviours (or modifications in old behaviours) in my child that I perceived as positive, chip related advances, but which were in reality completely unconnected with his increased consumption of chips. This doesn’t apply only to behaviour but to academic achievement and all other aspects of a child’s development too.
Intellectually, I know from experience that my own son often makes quantum leaps of understanding rather than learning in the linear way that most neurotypical children do, and I’ve anecdotal evidence that this applies for many other autistic children. Were ‘Chip Therapy’ to be introduced at around the same time a child achieved one of those leaps, it would be very easy to draw the conclusion that the leap occurred as a direct result of ‘Chip Therapy’.
For many high functioning autistic children quantum leaps can actually be anticipated by age, in much the same way that linear development in non-autistic children can be predicted. While the timescales and triggers may differ, there do seem to be patterns of behaviour and these seem related, as they are in non-autistic children, to the development of theory of mind. A good example is the onset of speech, where many ‘late’ talkers (as distinct from those who speak at the usual age or who remain non-verbal) start to talk between 3.5 and 4.5 years, when wider social inclusion tends to trigger a need for communication that may have previously been negated by parental intuition and/or intervention. If children were specifically targeted for Chip Therapy at this age, it would be very easy for a ‘Chip Therapist’ to take credit for the emergence of speech when it was actually a completely natural and potentially predictable development arising from social rather than therapeutic stimuli.
Ideally, from a salesman’s point of view, the best time to introduce parents to Chip Therapy would be around the time of diagnosis, because parents would be more desperate and psychologically vulnerable; grieving for the ‘normal’ child they have lost while struggling to adjust to the possible implications of lifelong disability and dependency. Understandably, they would, during this period, be more likely to ‘see what they wanted to see’. That this coincides with all sorts of input from other resources is a huge bonus, because any advances made due to the efforts of those other resources can also be ascribed to Chip Therapy. Increasingly children are being diagnosed in pre-school or reception, which dovetails nicely with the advances in speech, social awareness and theory of mind mentioned above.
Couple those factors with the onset of a ‘treatment programme’ that involves huge changes in daily routines and a ‘raising of the bar’ in terms of expectations and it would actually be more remarkable if advances – real or perceived – weren’t observed in a child.
There could be other changes that occurred not as a direct result of Chip Therapy, but because of new expectations implied by Chip Therapy. A parent might, for example, apply more rigid portion control at mealtimes which resulted in their child eating less, or, if the child had previously been able to ‘snack’ on biscuits etc at all hours of the day, in the child being incentivised to eat full meals at the designated mealtimes. Dietary restrictions could also prompt the child to eat a wider range of healthy food along with the chips, purely and simply because the unhealthy options previously chosen were no longer made available. Table manners might improve generally as a result of introducing rules and expectations regarding chip eating.
None of these things would make Chip Therapy anything other than snake oil, but if I could convince people they did, I could charge desperate parents large amounts of money for my ‘secret’, weaving more and more bullshit around the theory to disguise the fact that it really wasn’t very much at all and to justify the workshops, seminars, training and costs. If I then set up an official sounding ‘Institute of Chip Therapy’ that offered official looking qualifications in Chip Therapy Practice this would add weight to the perceived value of Chip Therapy and offer opportunities for increased turnover via pyramid style training schemes that turned every parent buying into the therapy into a qualified and practicing Chip Therapist who could then convert other parents. The power of word of mouth and personal recommendation is worth thousands in advertising, as any good con artist, spiritualist or faith healer would be able to tell you.
If business was brisk I could expand the operation by marketing special ‘Chip Therapy’ plates and cutlery, star charts and/or ‘complimentary’ therapies. I could perhaps work in partnership with pedlars of other brands of snake oil to create a ‘multidisciplinary clinic’, with each branch of the clinic adding a perceived (but totally imaginary) degree of credibility to the claims of the others. An added advantage here would be that the additional layers of the practice’s infrastructure would make it much easier to conceal the fact that each branch was effectively self monitoring and all professional certification self generated. The more anecdotal evidence there was that Chip Therapy worked (and there would be, because other people would replicate the accidentals and incidentals I created accidentally and incidentally and perhaps add more of their own) the bigger my Chip Therapy empire would get.
Of course, not everyone would fall for it and not every child would develop positive skills that I (or any other chip therapist) could take credit for – it’s an unfortunate fact that some autistic people never develop speech or respond other than out of necessity to any sort of social interaction. Having said that, when it didn’t ‘work’ for some (which of course it wouldn’t because it’s all bullshit and subjective projection), I could either blame the parents (“you’re not doing it right”), or the child (“there must be something else going on here, has he/she been checked for…”), or just use the ever popular cop-out of a small shrug and an explanation along the lines of “well, there are no guarantees, Chip Therapy doesn’t work for everyone, and, no, you can’t have your money back”. Any of those, or combinations thereof, sound familiar to anyone?
The implications of failure for the parent are of course devastating, because it implies a failure either on their part to deliver Chip Therapy correctly or on their child’s part to ‘respond to treatment’. If they buy into the idea that there ‘must be something else going on’ they might spend many years and thousands of pounds chasing inappropriate and unhelpful diagnoses, and if they encounter the wrong kind of ‘professionals’ in that quest actually end up buying into therapies, treatments and interventions or applying labels that are even more damaging or abusive.
On the other hand, they might just invest even more time and money in Chip Therapy, because if there is one thing that is absolutely established about human psychology it is our capacity for self delusion. You’ll find it in any psychology text book, in any book about the methodology employed by con-artists or snake oil pedlars and in any exposition of frauds, charlatans and purveyors of woo: The more an individual invests in something in terms of time, money, emotion and resources the more likely they are to ‘see’ results that aren’t real, to reinvest further, to promote and endorse the product to others and to deny/be in denial about any negatives that might arise.
In that respect, Chip therapy could be a highly successful and very marketable product – but its success would not prove it was valid, or that the results attributed to it were real. It couldn’t, because it isn’t and they ain’t.
My son has achieved far more than many 1000’s of children who have had thousands of pounds, hours and energy invested in them under the guise of various therapies and interventions. You could say that’s ‘luck’ or whatever (‘every child is different’ is the ultimate cop-out phrase in this regard, implying everything but actually meaning nothing), or even give him and/or me some credit for it, but one thing nobody with a vested interest in any of these therapies would do is accept it as evidence against the efficacy of their particular brand of snake oil. Which is odd, because statistically there are undoubtedly more kids like my kid, who have achieved sans snake oils, than there are who can be conclusively shown to have achieved as a direct result of them.
Oh no, actually, that’s not odd at all… it’s what the psychology books tell us is perfectly normal.
PS: My book on Chip Therapy will be available from Pingwing Publications just as soon as I’ve cobbled it together. Just £19.99 and every copy will come with a voucher redeemable at Iceland for a free 1kg bag of oven chips. If you really care about your child, pre-order your copy TODAY…