Feb 21 2008
The Brain Repair Institute of Canada makes all the promises a parent of a child with autism wants to hear. That in itself is sufficient cause for skepticism. Savvy consumers have learned to be skeptical of salesmen who make promises that sound too good to be true. But illness often begets a desperation that saps even the most cynical consumer of this virtue.
Their website proclaims:
The MAPS Treatment programme for autism (Monitored Multi-cortical Activities for Additional Pathways and Synapses) is a stress-free programme, designed for parents who have not given up hope. Who better than you, the parent, you are the expert of your own children!
You are the expert, you are in control, the system is stress-free, easy, and all natural. It enhances the natural healing ability of your child’s own brain. This stuff writes itself.
The claims for this treatment system are essentially those of psychomotor patterning – a treatment for cognitive delay and mental retardation developed in the 1960′s that was abandoned as a dead-end by the 1970′s. The primary problem with the treatment, which involved hours a day of laborious training, was that it didn’t work. This is likely due to a faulty underlying theory – that by mimicking passively the stages of development one can coax the brain into a normal developmental pattern. We have since learned that the brain develops (barring extreme environmental deprivations) as it is genetically programmed to develop, and our ability to influence this is frustratingly limited (despite a huge industry telling hopeful parents otherwise).
Yet the psychomotor patterning treatment – which survives today almost exclusively in the hands of those who developed the system and their heirs – convinced countless parents that it worked. All of the usual placebo factors led to the anecdotal experience of benefit when the scientific evidence clearly showed a lack of any benefit. Chief among them in this case, however, is that children, even delayed or impaired children, will still mature on their own curve and will therefore have increased and improved neurological function as they mature. The almost inevitable improvement resulting from simply growing older was then credited to the treatment.
And yet the treatment programs still create large numbers of devastated parents and families, for they were told to expect that when their child graduates from the program they will be “normal.” After years of rearranging their lives around the hours per day of patterning treatment, often recruiting extended family members and close friends, parents were not rewarded with the perfect child they hoped and dreamed for. Then, the double whammy – the promoters of psychomotor patterning blame the parents for not working hard enough. It was their failure, not the treatment’s.
I see the MAPS system as the next generation of psychomotor patterning, more user friendly and with updated jargon. Still, it makes similar claims. For now it seems to be targeting autism, but these systems tend to extend their claims over time. Before long they work for anything and everything. They have dispensed with the hours per day of training and now only 15 minutes twice daily is required. Their sales pitch is updated with claims about brain plasticity and neural stem cells. It all sounds really cutting edge (just like patterning did in the 1960′s).
Of note, however, there are no published studies referenced on their website. I did a Pub Med search and also came up with nothing. As far as I can tell there is exactly zero scientific evidence that this system works. Of course, they trumpet their testimonials – self-promoting testimonials are worse than worthless, and are certainly of no value as reliable evidence.
The appearance of benefit comes largely from the fact that most children with the diagnosis of autism are going to improve as they mature – with or without treatment.
A harm assessment of this treatment is mixed. At least it does not appear to be directly harmful (unlike other dubious treatments for autism, like chelation therapy). It is also much less disrupting to the lives of the child and family than the older patterning methods. It seems to stress interaction between the parent and child – which is a good thing. So I see this like many nutrition or lifestyle self-help books or gurus – they package some common sense or commonly known health advice into a feel-good philosophy but then commit their major sin by the overblown and unsupported claims they make.
So I will save every parent of an autistic child the time and money they would otherwise spend on this or a similar system – spend some quality time with your child. Play with them, give them your attention and affection, and don’t stress them out with intensive programs. There you go – that is just as evidence-based and just as effective as anything out there, and it’s free of charge.
But to clarify (I have found writing this blog that if I leave even the slightest crack for misunderstanding, someone will step through), I am not saying that special education programs for autistic children or children with learning disabilities or developmental delay are of no value. The evidence shows that early intervention with autistic children yields better outcomes. This is partly due to just avoiding neglect, but also probably results from teaching methods used to play to their cognitive strengths and shore up their weaknesses. So in addition to my above recommendations I would also recommend taking advantage of all the special services your school system has to offer or that your pediatrician recommends.
The MAPS treatment promotion, however, is selling a service by making unsubstantiated claims. Rather than a learning or education program, they are selling their program as a “treatment” that will “repair the brain” resulting in a normal child. They make vague references to plasticity and stem cells to give their claims credibility, but the evidence does not support such claims. They also make patently false claims. For example:
Age is irrelevant with brain plasticity. It doesn’t matter if the person is 3 years old, 33, or 93 years old.
This is simply wrong – plasticity (the ability of the brain to rewire itself in order to compensate for damage or adapt to new function) steadily decreases as we age. Infants have profound plasticity, and 93 year old have negligible plasticity. They also claim:
While the theory says that the brain can repair everything, there are ways to make the MAPS treatment program not work, by interfering with the brain growth that happens for 3-5 hours after each 10-minute MAPS session. The brain grows when it is at rest.
There is no justification for the statement that the brain can repair everything, and plenty of evidence that it cannot. Also, since they appear to be just making up their claims for optimum marketing, it is curious that they would include this caveat about interfering with the treatment. I suspect this is their escape hatch – after spending all the time and money on the program, discouraged parents need to be given an excuse as to why it did not work as promised. Here again we see a built in reason to blame the parents for the treatment’s failure.
Finally, the one ubiquitous feature of such dubious treatment programs (or any questionable health product) is that the promoters never do the research to support their claims. This is inexcusable. If their system works even remotely as well as they claim it should be relatively easy to perform a well-controlled study and provide reliable data as to its effectiveness. Not doing so is malfeasance – they are depriving the world of an effective treatment. Of course if the treatment does not work, or is no more effective than basic controls, like just spending quality time with the children, research can help us avoid unnecessary time and expense on an ineffective treatment, and distraction from methods that may be more effective.
Proper research is therefore an ethical imperative, and the failure to do so is unacceptable. Testimonials and anecdotal case reports are not sufficient. Excuses that practitioners are too busy treating clients or don’t have the resources are also unacceptable. There are systems in place to test new ideas and methods – there is funding for research, and peer-reviewed journals to publish the results. This system exists for a reason – to weed out ineffective treatments and optimize the treatments that are given to the public. Making and end-run around this system only serves one purpose – to maximize profits with no care given to the actual safety or effectiveness of the treatment being sold.
There are plenty of reasons to be skeptical the Brain Repair Institute and their claims. Parents should not allow themselves to be distracted from their skepticism by the blinding hope that is being peddled.
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