Before I begin this blog I must state that I am not an advocate of every type of Biomedical Treatment that is available out there, I'm just here to inform and educate.
In the beginning days of my Adventures in Autism, I searched long and wide for solutions to my child's woes. Besides my daughter's stims and other external autistic traits, she was also plagued with a number of internal distresses as well. This led me in my search for some supplemental support, and I don't mean the prescription med kind. The first thing I read was a book that my wonderful, supportive mother-in-law bought me, Louder Than Words, by Jenny McCarthy. It, fittingly, was an autobiography of her own beginning days into autism. In it she describes the different biomedical treatments that she tried and had success with. I read this with some skepticism because, for one thing; this was one person's account. Not to discredit her experience in any way, I am just very 'Vulcan' (ha ha) in nature at times and I require a little more substantial proof (ie. scientific study) to base my actions upon. I slowly began to realize in researching the phenomena behind the Biomedical Approach, Jenny wasn't the only person having success with it.
The first thing that really satisfied the 'Vulcan' side of me was the Summary of Biomedical Treatments for Autism, by James B. Adams, Ph.D.
http://www.autism.com/treatable/adams_biomed_summary.PDF -
This summary gives a detailed analysis of many types of treatments available (including everything from the GFCF diet, to vitamins, to EFA's and everything in between) and the success that they've had based on clinical trials. I found the pdf on the Autism Research Institute site. This among many, many (did I mention many?) other articles, books, etc. is what brought me clearly in my decision to begin this form of treatment. I read and read to make sure that I was making the best informed decision for my daughter and that each treatment would be healthy and safe for her.
Also, I found on the Generation Rescue website http://www.generationrescue.org/action.html , founded by Jenny McCarthy and Jim Carrey, a listing of the DAN (Defeat Autism Now) protocol which is the list of treatments that Jenny had success with for her son. I personally devised a list for what began my own series of 'clinical trials' with my daughter. I'll be honest with you, some things worked, and some things didn't, but all were worth it for the results that ensued.
In conclusion, the most important advice that I have when beginning your own treatment is this:
1. Make very well informed, well read decisions about treatments and your child's health; do not take what people say and let them skew what you know to be best.
2. Write everything down: start a log when beginning a new treatment, write down every reaction, response, etc.
3. Only do one treatment at a time: don't get anxious for results, you won't know what's working if you try them all at once!
4. Beware, there are some potentially dangerous alternative treatments out there, again: Do your research!
Finally,
5. Pray: I trust in the guidance of my Heavenly Father to help me make informed decisions and for the patience to make it through the rough road of treatment, because believe me, it's ROUGH.
I wish everyone luck on their own personal journey and I will continue to write posts which detail the successes (and some failures ;-D) that I have with my own Adventures in Autism.
Blessings!
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Comments (10)
Is this a curebie post? Because if it is, FAIL.
@QuantumStorm@xanga - Hey, how you doing? I saw the title and noticed that there was one comment already and knew it had to be QuantumStorm.
I just finished watching an incredible lecture from Temple Grandin given at UC Davis Mind Institute. Best presentation I have seen from her yet. She covered everything, including treatment options and how to go about weighing pros and cons. She knows her stuff and is quite qualified not only because she herself has high functioning autism but is well educated which should make old Quantum there very happy, or not. : ) Cheers
http://www.youtube.com/watch?v=2wt1IY3ffoU&feature=related
@P1AutismMom - Her qualifications (which are in animal science, not in any human psychology-based field, let alone medicine-based) are irrelevant; even if they were related to her discussion they do not affect her arguments' validity. Her being autistic is also irrelevant.
However, her views are insightful; her treatments are not so much a curebie cry as they are dealing with the symptoms, not the cause. Until we know how to deal with the cause, her position is the more conservative and appropriate one, at least in comparison to the idiotic "curebie" concept.
If you can get a hold of this article, I suggest you read it:
http://www.springerlink.com/content/q2322161632218u5/
(You being in the general sense, not specifically to the writer of this post.)
@QuantumStorm@xanga - Well, you certainly fail at being open-minded.
It's interesting that you bring up treating the symptoms, though, because that's what a lot of biomedical treatments do. I myself do not think that I need to put my child through a lot of the more severe biomedical treatments (such as HBOT and chelation), but we do subscribe to the idea that diet plays a huge role in overall health and behavior. I have ADD. I know that there are certain foods (even ones that are considered "normal" to most people, such as regular white potatoes) that will make me feel nervous and give me an inability to focus on any one thing. I know that if I eat something that has a ton of preservatives in it, as well as food dyes/MSG, etc., it will drive me crazy. I don't find that thinking to be any different from taking away the gluten and casein from my daughter's diet, which has definitely helped her digestive issues as well as calmed her down a bit from where she was 2 months ago. I don't think it's a "cure" and I don't think this post lays out treatments that are "cures", but I cannot deny that my child is less uncomfortable in her own skin as well as just feeling happier in general.
@Morningstarrising@xanga - Please explain how I am failing at being open-minded.
@QuantumStorm@xanga - From what I've observed, you dismiss every single post dealing with alternative treatments that could have any positive impact on an autistic child at all as being "curebie".... and you seem to dismiss every post that has anything to do with vaccines affecting us at all.... no, there couldn't possibly be ANYTHING bad in them, because the medical professionals would never EVER lie to us to pad their wallets. You're clearly not very open-minded at all.
@Morningstarrising@xanga - I don't dismiss posts without good reason. If the poster cannot provide evidence for their claims, then there is no point in taking their claims seriously. If I have deviated from this method, by all means, demonstrate it instead of wasting my time.
You also appear to be suffering from a bad case of illiteracy - I did not say that treating a child's autistic symptoms were bad; if you had bothered to see what I wrote to P1AutismMom you would recognize this. What I criticize is the delusion that parents have that autism is something that can be easily "cured" with diet A or food B or exercise X. What happens is parents end up wasting valuable time and resources pursuing these pipe dreams when, given a little patience and fact-checking, they can do more good for their child than bad by simply mitigating the negative effects of autism. No one denies that the intentions are pure; but good intentions do not justify idiocy.
//and you seem to dismiss every post that has
anything to do with vaccines affecting us at all//
Again, if the poster does not provide evidence for their claims, I see no reason to accept their arguments. If someone posted an entry claiming that rat poison was the cure for autism and provided no evidence supporting this claim, would you blindly accept it?
If you can demonstrate, using evidence, that I have deviated from this at any point, please let me know.
//no, there couldn't possibly be ANYTHING bad
in them, because the medical professionals would never EVER lie to us to
pad their wallets.//
Straw-man fallacy; I never said this, so this is irrelevant.
//You're clearly not very open-minded at all.//
You're clearly incapable of cracking a dictionary open.
From:
http://wordnetweb.princeton.edu/perl/webwn?s=open-minded
Open-minded: ready to entertain new ideas; "an open-minded curiosity"; "open-minded
impartiality"
From:
http://www.merriam-webster.com/dictionary/open-minded
Open-minded: Receptive to arguments or ideas
Being open-minded means that you are willing to CONSIDER new ideas and arguments; it does NOT mean you have to ACCEPT them. I am willing to consider arguments regarding vaccines and autism, or curebie concepts, but it does not mean I have to accept those arguments, especially when the person is unable to provide evidence supporting those arguments.
@Morningstarrising@xanga - The evidence provided is largely anecdotal and this is due to the lack of funding for studies. There simply is no profit in advancing research into readily available substances and dietary changes unless maybe you own a franchise of Whole Foods stores. It is our choice to work around the confines of western medicine and many doctors are also exploring alternative therapies simply out of necessity.
Many of the Doctors at Kaiser Permanente are DO's as well as MD's My primary care physician who is now retired also practiced acupuncture and apparently it was not a problem for the major San Diego hospital that appointed him Chief of Staff in the 90's. My hope and prayer is that with the farther reaches of the medical establishment along with proactive parents there will be discoveries and more meaningful treatments to alleviate the often physically disabling symptoms that go hand in hand with ASD.
In the meantime we do our best, don't we.
Just wanted to send you a little love from a dad (and a mom) working their way through the same things. I'm praying with you ... but remember the old adage ... The Lord help those who help themselves. Your child is quite lucky to have you.