To do this, we need to move ahead sooner rather than later not just with preclinical studies but even more with observations that come from treating people with basic protocols that we know aren't dangerous or at worst are low risk. For example, if you study interventions using diet and nutritional support and you study the differences in the treatment responses, you can learn a lot more about subgroups than if you don't treat people. In the Autism Society of America, we started the Treatment-Guided Research Initiative (TGRI) to do this work. TGRI is looking at what kind of infrastructure we can build to support learning from the actual treatments that are going on right now-and you need to understand that in autism there is a massive, basically underground, clini-cal rebellion going on with people saying, "My doctor is telling me there's no hope. I don't believe this. My child has a short de-velopmental window of opportunity, so I don't have time to wait around, and I'm taking matters into my own hands." In many ways, highly motivated parents are leading the charge, and many are being their own medical case managers. Rather than dismiss-ing these parents as gullible and crazy, as so many mainstream doctors do, we think it would be more constructive to ask how we can turn this huge body of experience into data that can feed back into the process and help it work better. What kind of database can we build to capture the information? What do we measure and how do we best document improvement and recovery? We need a whole new way of collecting our data and following it.
So a portion of my energy is going into helping to frame that effort so that we can learn from what we're doing, what's actu-ally going on, as opposed to having some sort of ideal of what a perfect study is like, a false homogenization of everything into a standard clinical patient receiving a standard intervention. You can never reach that "ideal," and you never find out what's going on because the situation at baseline is not homogeneous like that. In this effort we are finding allies in a lot of other venues.
AT: At this point in time, is it possible to speak of curing autism?
Dr Herbert: You have to define your terms. There's a movement within autism called the Neurodiversity Movement, and their point of view is that autism is a way of life and a way of perceiving. It's not a disease. They equate the idea of curing autism with geno-cide. I think that premise needs to be picked apart. People with autism can make incredibly fantastic, unique contributions to society. They have unique perceptions, unique perceptual capabilities. This is outstanding. Some of us wonder whether there is certain a kind of biochemical feature-this is pure speculation-that works for having those wonderful capabilities, but then if the person with this capability gets environmentally challenged, that person is more vulnerable to becoming metabolically and medically overwhelmed.
My feeling about treatment and autism is that we want somebody to function optimally. It's not that we want the brilliance to go away; it's that we want the suffering to go away. We want the painful gastrointestinal inflammation, the sleep disturbances, the self-injurious behaviors-the things that cause the individuals themselves to suffer-to go away. We're not trying to change the way someone thinks; we're trying to allow the person's capabilities to come to full flower because they're not being tripped up all the time by suffering and medical illness.
AT: It appears that there is an intellectual or creative capacity that people who have autism exhibit that is beyond what we would consider normal or baseline.
Dr Herbert: It's completely fascinating. I think it's fantastic, and I have friends who are either autistic, have been autistic, or are sort of broad autistic spectrum, which means that they have some features that are autism-like but that these features aren't promi-nent enough for them to be classifiable as "on the autism spectrum"-kind of like an autism "shadow syndrome"-and I learn remarkable things from them. It's a real treasure for me. It's a treasure for the world. This again poses the question of what is the delicate relationship between those capabilities and when it goes awry.
The people that I'm talking about have pretty full and independent lives: they can hold jobs, they can talk, they can write, they're toilet trained. I include that last item because it gets pretty primitive-a lot of people with autism are not toilet trained. That's a problem. It really cuts your options not to be toilet trained. It cuts your options not to be able to talk, particularly if you want to talk. Some people in the Neurodiversity Movement say that not being able to talk is not a problem, but not everyone with autism feels the same way. And it cuts your options to be distracted by pain.
What is the cellular foundation for the brilliance, and does it have any overlap with the cellular foundation for vulnerability to the physical suffering? That's an open question. I don't know the answer. Some people speculate that autistic people have more glutamate in their brains and you don't need that much more to get into trouble, but at this point that's just a theory, although I think it's a promising and interesting one.
AT: How has the mainstream medical community reacted to the new thinking about autism, and what is the future of funding for the research needed to create new paradigms in dealing with it?
Dr Herbert: I have said some things about the popular cultural understanding of autism. I think that both the popular and profes-sional understanding of autism is shifting. One of the things I and others have been noticing is that if you talked about gene- environment interactions a few years ago, you'd be marginalized, whereas now you can hardly submit a paper on causes of au-tism if you don't say it involves gene-environment interaction.
Also, as I said, people are starting to think about treatment and recovery. It's not everywhere, but it's enough places, and there is interest from enough reporters and enough researchers that I think we're hitting a tipping point. In the last number of months there has been a much more steady flow of press coverage friendly to one or more dimensions of the inclusive whole-body model-treatment, environment, recovery. Some people have been saying online that the paradigm shift has occurred-that we need to do more work, but that we have crossed the line and are on an upsurge.
In the last year I've seen very well-placed people starting to entertain models featuring gut metabolomics and other complex and intrinsically environmentally modulated models. People who a few years ago would never talk about these things are now get-ting that this is really important. We are on the verge of having the weight be more with this model. It will take a lot of work to flesh it out, but at least this is going to be a legitimate model, and it's going to be an area of genuine concentration. You won't have to scrape together your pennies and do it in your garage.
There is still a lot to do in advancing the new model. Seeing autism as a whole-body condition, looking at all of the biological levels-and not just the behavioral "outputs"-as part of the "autism" is a way of perceiving that can be learned and that can change research and clinical practice. As the plausibility of the approach is more widely accepted, the work will become more full-bodied and expansive. People who previously might have shunned it will increasingly work to find common ground. I am certainly experiencing this in my relations with a growing number of conservative colleagues. I hope that this work interpenetrates with the approaches of others so all become richer. And most of all, I hope this approach helps us efficiently and rapidly find more ways to help individuals affected by complications of autism-and others, as well-more effectively.
Editor's note: This interview was edited due to space limitations. To read the complete interview, please visit our website: www.alternative-therapies.com .
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