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could Yuri Danilov help me and other ASD sufferers?

Posted Jul 10 2010 12:00am

Some readers of autism's gadfly will remember some time ago I wrote
a post about the locus coeruleus and autism . One of the readers and commenters of the post was a gentleman named Yuri Danilov, who gave me his phone number and signed his name and asked me to call him. I wrote down the phone number and deleted the comment. I was apprehensive. When I searched for this name in Google, I discovered that this person was a brain researcher and biophysicist in this neurologic rehabilitation department at the University of Wisconsin. I was flattered this pristine individual and scientist would take the time to read my humble blog and called him up.

He told me that he believed he had found a very new and revolutionary treatment in autism that would greatly help ameliorate the symptoms of autism and he was looking for suitable research subjects. He had a thick Russian accent and I had a bit of trouble understanding everything he said. I asked him if this was a cure for autism (something as most readers of my blog know I long for). He replied that it was not a cure but a very revolutionary treatment but that nobody believed him. He asked me how old I was. I was 53 at the time. He claimed that was not necessarily too old to participate in this study, but I had the feeling he may have felt I was a bit older than the research subject he was looking for.

Since I had never heard of him I was wondering if it was a coincidence that he happened to hold a faculty position at the same university as rogue neurodiversity researcher Morton Gernsbacher. I asked him if he was working with Gernsbacher. He replied that he did not work with Gernsbacher but he knew someone who had worked with her.

I told him that I was hesitant to travel to Wisconsin unless I was compensated for it, at least had my travel and accommodations paid for. He told me that he had people come all the way from Australia to participate in his research studies.

Since he had read my article on the locus coeruleus I wondered if his research was somehow related to this area of the brain which is the central location of the various tracts of axons that travel to various locations in the brain carrying the neurotransmitter norepinephrine. He just said that his research involved the brain stem. When I tried to pursue the matter further, he was rather tight lipped and just said that I could check out the lab's website and then email him if I had any further questions.

As I read about him and his colleague, the late Dr. Paul Bach-y-Rita, I became fascinated and intrigued. They had developed a technique where blind people whose retinas had been damaged could put this device on their tongue which had electrode arrays and the senses through the tongue could enter the visual cortex and the blind person could end up seeing. Bach-y-Rita had stated you don't see with your eyes you see with the brain. Eyes are merely a vehicle that sense changes in light energy but it is the occipital cortex of the brain that perceives these energy changes and thus sees. The skin and the retina have in common they are both sensory receptors and that may be enough. Danilov was a biophysicist and neuroscientist who worked with Bach-y-Rita who passed away about four years ago. The tongue is considered an ideal entry point into the brain for sensory substitution because unlike skin on other areas of the body it generally has no insensitive layer of dead skin on it.

The research that Danilov is also involved in addition to sensory substitution is neuromodulation , which involves stimulating the brain in various ways such as attention to a task, implanting electrodes in various areas of the brain to abort epileptic seizures, and the new cutting edge treatment transcranial magnetic stimulation which John Robison has been participating in. They are also using a revolutionary new technique called cranial nerve noninvasive neuromodulation, to help with neuroplasticity.

I never heard back from Danilov and I seem to remember I sent him an email about something (don't remember exactly what) which he never answered. I won't rule out writing him again at some point.

My recent track record as a research subject has been less than stellar. About 12 years ago Greg Allen was doing a study in the Courchesne lab involving fMRI. My head was too large to fit into the MRI scanner along with the computer equipment so I could not participate. I tried to have an MRI scan at Cal Tech in a study that Dan Kennedy was doing and for some reason the coil would not fit around my head or on my face. I wrote about this in a previous gadfly post . This is in contrast to my earlier experiences as a research subject where I underwent a couple of MRI scans that Eric Courchesne and I guess some other people who worked with him were doing. So even if I were provided airline ticket and hotel in Madison Wisconsin for a brief time I might not be of any use to Dr. Danilov either.

One of the things I don't understand is how this stuff can be applied to autism where the etiology of the brain problems is still not very well understood. Of course I am not sure what Danilov and his people are doing and I guess I will have to wait to find out. I still wonder if there is any chance this treatment (albeit experimental) could help me and others on the spectrum. I find it interesting that Danilov stated that no one believed him. The people who treat autism with questionable non peer reviewed treatments such as chelation, hyperbaric oxygen, gluten free diets etc are believed and still have their adherents. Rimland's heir apparent, Steve Edelson, has been trying to bring back research into secretin in spite of study after study refuting its effectiveness.

I guess I will never know and I will just have to wait and see what Danilov's research produces. At some point he will undoubtedly publish in peer reviewed journals if this research shows promise in treating ASD's. The media will likely pick up on this as he and Dr. Bach-y-Rita before he passed away have already received some media attention.

It does not look like I am going to be a research subject for this lab let alone benefit from what may be a revolutionary autism treatment though.
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