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Hi Dr. Stoll,
I'm a little confused??? I know you keep up on the latest research, but pertaining to Autism, where do you look. I saw in the Archives someone say they went to a seminar and someone from a lab spoke probably Great Smokies. Are they doing Autism research too? Dr. William Shaw (the guy I told you about) works in conjunction with Bernard Rimland. They wrote BIOLOGICAL TREATMENTS FOR AUTISM and PDD. He, Dr. Shaw speaks at many of the conferences. He has the Great Plains Laboratory. Their main interest is Autism and testing. They do of course recommend the tests for other disorders I have mentioned to you before, such as CFIDS/Fibromyalgia. He has a video called Autism and Microorganisms. Karyn Seroussi's book with their recent research pertaining to shots, yeast, LGS, casein and gluten. I wasn't sure if you already new of this stuff, I know not the lab, but where do you get the latest research info. I'm a respite caregiver and most of my kids are Autistic. I work full time which is hard to achieve. Most I've been with four years. Some of the doctors should spend the time I have and see some of the things I see. It seems my observations are usually considered irrelevant. One thing I agree with BJ Freeman from UCLA, is the high incidence of comorbidity of AD/HD with Autistic Spectrum Disorder especially the Asperger type. They get mixed diagnoses. Frankly, I'm of the opinion AD/HD is actually apart of the spectrum. My son has it (ADD combined type) You should see him rock when he's agitated. When you see it everyday and live very near research places, it's hard not to miss. Have you ever heard of Dr. Michael Lynch? He works for the state and is in private practice in Orange County, CA. He has a whole other tack on AD/HD, and dyslexia from research at UCSD. Well known to LDA (Learning Disabilities Assoc.) They've been doing their own research project on Asperger's Syndrome. They were my support group of choice for my son because they encompass LD, AD/HD and associated disorders. I run into all sorts of people in San Diego, since we have so many universities and hospitals per square mile. The seminars are getting to be too expensive, we take care of the kids so the parents can get a break but we are not paid well. I like to know about the disorders of the children and the few adults I see. Therefore, that is why I'm asking where you are reading so I can get further incite. Thanks (I wrote another book (LOL) ) Renee
In Reply to: Autism posted by Renee Begley on August 11, 2000 at 03:36:27:
Renee:
If you have not already done so, click on the Autism link in our Symptoms and Diseases Quick Reference Guide. From the Glossary link on Autism (which I'd be glad to improve, if someone has a suggestion what would be helpful to put there-but I hate to simply repeat Walt's Summary, which is sooooo simple and to the point) you can see Walt's Summary and Q/A Archive on Autism. In there you will find reference to Functional Medicine Update, where apparently a lot of research has been shared on autism in the past year or two. This is where Walt gets his most-recent information on research subjects like autism. These tapes are available by subscription, and apparently back-issues are also available (no, I don't know the cost per tape), if you can figure out which one you want/need.
Walt has subscribed to this ($225/year, if I remember right) for years. The trouble is that they don't seem to produce their annual index any more, so finding appropriate back issues can be challenging. Too bad they don't (at least they did not the last time I looked) have a searchable back issue index on their web site! I guess that's why he recommends folks contact (call) FMU directly to determine and to order tapes related to their specific interests. Sounds to me like your "school" or "center" or whatever it is ought to subscribe to FMU to keep up with developments that relate to autism, etc. And keep the tapes in a "library". I know you all probably don't have much money, but perhaps take up a collection from the parents and then circulate the tapes around among the parents when they come in.
More importantly than the absolute most recent research, test results, etc. it would seem to me would be determining what actually works best for each individual with autism. That in general is what this site is all about (not Autism specifically, but determining what works best for each individual).
If you have not already done so, take a look at our Glossary entry and then the Archives on LGS. That seems to be the crux of actually making a difference in autism. Not saying that LGS causes all autism, but that they are so closely intertwined that dealing with the LGS at the very least helps relieve the Autism (this I got from reading Walt's replies in some of the Archives).
Hope this helps!
RHJ++
Since
In Reply to: Autism posted by Renee Begley on August 11, 2000 at 03:36:27:
Renee, Are any of your care patients by chance involved with theraputic horseback riding? These are the type of persons we will specialize in. We are in the process of starting a new facility this fall here in Utah county. I have seen the most beautiful miracles occur with autistic and AD/HD and many others. Dyslexia, does seem some how connected I agree. I am intrigued by the connection those with depression seem have with the autistic. Rocking etc.
My brother is a geriatrition/physc in Belgium. He mentions how some of the elders retreat to rocking. The mental isolation of oneself when they retreat into the practice.
It is fascinating.
In Reply to: Re: Autism/theraputic Horseback Riding posted by Nakita on August 11, 2000 at 22:37:53:
Yes, I have one child diagnosed with Autism (Asperger's) and he stopped taking private OT and started the horseback riding. His parents say he is doing very well and wants to continue even after school starts in September. Sounds like a great idea, I've been with him for four years and he's like my own. Where did you hear about therapeutic horseback riding?
In Reply to: Re: Autism posted by RocketHealer Jim++ on August 11, 2000 at 07:47:06:
Thanks for the info. I have trouble with parts of the site because I have webtv for internet instead of a computer. Yes, I agree with you. That's why the lab I mentioned I believe was set up. There are several people working togther so to speak in this area. Dr Bernard Rimland is kind of a coordinator. He runs the Autism Research Institute here in San Diego and considered by most to be the foremost knowledgable person about Autism. He's a research psychologist and his son is autistic. They say he founded the autism society (people argue about that one) He's like Dr. Barkley with AD/HD. I don't have a center. In Calif. we have a Dept of Developmental Disabilities, under them in each county an Area Board and a Regional Center. The Regional Centers are autonomous from each other. The governor regulates by bill, how the program for respite is carried out by each of the centers and they are in contract with the DDD, he also decides how much the caregivers receive. The Regional Centers have contracts with vendors to provide the state mandated services. I work for an agency who is a vendor but parents can also be vendors here, but not in all counties. San Diego county has a very good program for the most part. The agency I work for is one of the better ones here. The program could use some improvements, but it is free to the families. I already knew about the LGS, the people I've been talking about are doing this type of research; diet, allergies, LGS,toxins, yeast, microorganisms, etc. I came on this site for other viewpoints. I try to keep an open mind, always something new to learn.
In Reply to: Re: Autism posted by Renee Begley on August 12, 2000 at 04:31:38:
Thanks Rene for telling about your organizations and some of the goings-on.
Can you tell us what parts or pages or actions of this site that you have trouble with using WebTV? I've not heard of any problems here using that lately. I don't have WebTV to be able to test with it for myself.
And given you already knew about LGS, etc. what other sort of viewpoints are you seeking/expecting to find, here or elsewhere? If we knew what specifically you are looking for, we might be able to help you find it.
Another thought about the Functional Medicine Update that I had sometime after my last post: Since as I underestand it, they review, summarize, comment on various recent research results in the broad areas they cover, if there were not any significantly exciting research results specifically on Autism in a given quarter, then subscribing might seem like a waste of your money and time that quarter. Unless, of course, the person(s) listening to it have a wider interest than in just Autism.
Thanks!
RHJ++
In Reply to: Re: What parts of the site do you have trouble with using WebTV? posted by RocketHealer Jim++ on August 12, 2000 at 06:13:49:
I was having trouble getting into the glossary, but I tried this morning and went right in.
I like to look at other viewpoints because not all of the doctors say the same things in the same way. Even though they may quote research and have the degree and all, their belief systems seem to get involved. The doctors within their own type of treatment groups, say, alternative, naturopathic, holistic, allopathic, whatever don't all agree. I like to see what they're saying and why. I think the patient needs (including myself) to take control of choices. It should be a team effort. You see everyone feels their method is the best. Dr Stoll seems to be pretty open-minded and his site is very elightening. I'm very opinionated at this point in life because I feel I have been abused by doctors in the past by being treated like I am stupid because I'm not the one with the degree. I don't like being given prescriptions without any idea of why I'm suppose to be taking them or what they believe to be wrong and if they don't know what is wrong or are unsure, then say so. No one can know all things all the time. Of course, some of the doctors don't keep up on the CFIDS/FMS thing. Back in the 70's I managed a health spa and taught massage. Don't ask me why, but when you deal in these areas you tend to get involved one way or another in alternative ways of dealing with health. The LGS, I've been reading about in the last year or two. One of my client parents is in to alternative stuff and I read everything she gets and then go on my own research to see what others are saying about it. I feel one can't just jump into things just because someone says it works and it seems there are always exceptions to the rule. I feel my brother and I don't always respond to treatments in the normal fashion. I think it may have a lot to do with my Mother's health and her smoking when she was caring us. My brother and I have quirky things wrong with us and our children too. Our kids seem to have behavioral problems,etc. You know the stuff. Special ed, county mental health, psychiatrists, and your run of the mill unenlightened doctor, blundering along. So, I read and get referrals, I make some of my own choices. The main problem for us is a money factor with getting tested. We're working on it. Getting my family to pay attention has been a problem too. Without writing anymore books, I would suspect you get the drift. Thanks for your help.
In Reply to: Re: What parts of the site do you have trouble with using WebTV? posted by Renee on August 12, 2000 at 10:49:54:
Thanks, Rene!
In Reply to: Re: Autism/theraputic Horseback Riding posted by Renee Begley on August 12, 2000 at 04:10:42:
I first heard about it maybe 8 years ago while living in New Mexico. I checked into it and found a program in El Paso. I was living in Las Cruces at the time so El Paso had the closest available facility. I attended several seminars and clinics. It was incredible to discover how the horse is the only animal to simulate the human gait. No machine comes close to offering what theraputic horseback can do. O.T, P.T, R.T. and speech therapists can utilize this resource. I have yet to see a patient who didn't benefit.
THIS is why I have always dreamed of opening a facility.
In Reply to: Autism posted by Renee Begley on August 11, 2000 at 03:36:27:
I have read of cases over and over again of dyslexia "cured" with proper mineral levels in the body.
In Reply to: Autism posted by Renee Begley on August 11, 2000 at 03:36:27:
Hi, Renee.
I wish everyone would take this as seriously as you have!
ALL I know I got from the monthly review of the world literature by "Functional Medicine Update". Call (800) 843-9660 and ask them for the references posted over the past 2 years about autism. Offer to pay them for their time since this is not the business they are in.
Many of the names you have mentioned I recognized but few of them are included in what FMU believes to be significdant enough to be mentioned.
There are MANY pathways to autism and many of THOSE are genetic susceptibilities to specific lifestyle mechanism that CAN be modified. LGS is related to most of them (along with the embryologically linked defect in the blood brain barrier).
Let us know what you learn.
I think every professional you have listed has a little piece of the mechanisms. It is sort of like "the 5 blind men and the elephant" at this stage of research progress.
Let us know what you learn.
Walt
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