Guest guest Posted March 29, 2010 Report Share Posted March 29, 2010 Just a thought - perhaps the word AUTISM could one day take on a new meaning, such an abbreviation for AUToimmune and Immune System Malfunction? From: Kristy Nardini <knardini@...> Subject: RE: Stop Calling It Autism! in Facebook " ' ' " <jrodrig6605@...> Cc: , " Goldberg, MD " <office@...> Date: Monday, March 29, 2010, 12:57 PM  Hi , I guess I need to better understand what, exactly, the " marketing message " is. Are we going to shout from the rooftops that our children are sick with some big, bad, ugly virus(es), but we don't have definitive proof and we don't have a definitive cure? Because I'm not ready to do that with my son and our family. I want to get the word out that our children do not have the A-word, but we have to really think this through and make sure they won't be stigmatized and ostracized because the medical terminology and treatment are not 100% defined. I, for one, do not want to - cannot - risk that my son will lose the a-word diagnosis just yet from the standpoint of the school district and our regional center. I also do not want to run the risk that what he has is likened to HIV/AIDS, and scare potential playmates and prevent him from possibly being able to play team sports. So, I hope you can help me to understand a marketing message that will work for the mainstream, those who really don't care outside of their immediate circles of concern (i.e. people like my own stubborn brother and sister), those who can't and won't take the time to really understand the science behind the explanation. In other words, the message really needs to be softened, even " dummied-down " , for lack of a better term. Otherwise, I'm really and truly sorry, but I cannot be a part of this - yet. Kristy Nardini TazziniTM Stainless Steel Bottles www.tazzini. com kristytazzini (DOT) com Phone: 858.243.1929 Fax: 858.724.1418 P Please consider the environment before printing this email. From: [mailto:jrodrig6605@ hotmail.com] Sent: Monday, March 29, 2010 8:24 AM knardini@roadrunner .com Subject: Stop Calling It Autism! in Facebook Hi Kristy, As part of creating the Stop Calling It Autism! nonprofit organization we already had in our plans many different marketing strategies to get people to know about this organization. Facebook, Twitter, groups are just a few ways that we can get thousands of people to know about our great initiatives. That's how we can make the noise and eventually a difference. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2010 Report Share Posted March 30, 2010 Very good! I can see it! ________________________________ From: Briffa SeventySeven <briffa77@...> <jrodrig6605@...>; Cc: ; MD Goldberg <office@...> Sent: Mon, March 29, 2010 9:44:01 PM Subject: Re: RE: Stop Calling It Autism! in Facebook  Just a thought - perhaps the word AUTISM could one day take on a new meaning, such an abbreviation for AUToimmune and Immune System Malfunction? From: Kristy Nardini <knardini@roadrunner .com> Subject: RE: Stop Calling It Autism! in Facebook " ' ' " <jrodrig6605@ hotmail.com> Cc: groups (DOT) com, " Goldberg, MD " <office@neuroimmuned r.com> Date: Monday, March 29, 2010, 12:57 PM  Hi , I guess I need to better understand what, exactly, the " marketing message " is. Are we going to shout from the rooftops that our children are sick with some big, bad, ugly virus(es), but we don't have definitive proof and we don't have a definitive cure? Because I'm not ready to do that with my son and our family. I want to get the word out that our children do not have the A-word, but we have to really think this through and make sure they won't be stigmatized and ostracized because the medical terminology and treatment are not 100% defined. I, for one, do not want to - cannot - risk that my son will lose the a-word diagnosis just yet from the standpoint of the school district and our regional center. I also do not want to run the risk that what he has is likened to HIV/AIDS, and scare potential playmates and prevent him from possibly being able to play team sports. So, I hope you can help me to understand a marketing message that will work for the mainstream, those who really don't care outside of their immediate circles of concern (i.e. people like my own stubborn brother and sister), those who can't and won't take the time to really understand the science behind the explanation. In other words, the message really needs to be softened, even " dummied-down " , for lack of a better term. Otherwise, I'm really and truly sorry, but I cannot be a part of this - yet. Kristy Nardini TazziniTM Stainless Steel Bottles www.tazzini. com kristytazzini (DOT) com Phone: 858.243.1929 Fax: 858.724.1418 P Please consider the environment before printing this email. From: [mailto:jrodrig6605 @ hotmail.com] Sent: Monday, March 29, 2010 8:24 AM knardini@roadrunner .com Subject: Stop Calling It Autism! in Facebook Hi Kristy, As part of creating the Stop Calling It Autism! nonprofit organization we already had in our plans many different marketing strategies to get people to know about this organization. Facebook, Twitter, groups are just a few ways that we can get thousands of people to know about our great initiatives. That's how we can make the noise and eventually a difference. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2010 Report Share Posted March 31, 2010 I agree, the term needs to be dummied down and also as Dr. Goldberg explains, this is a epidemic that is going to get worse. Right now, this is not on the average person's radar screen because they do not think it will affect them. If they knew it could be worse and perhaps their kids would be having kids with autoimmune disease and worse, maybe people would pay attention.  Lynn From: Kristy Nardini <knardini@roadrunne r .com> Subject: RE: Stop Calling It Autism! in Facebook " ' ' " <jrodrig6605@ hotmail.com> Cc: groups (DOT) com, " Goldberg, MD " <office@neuroimmune d r.com> Date: Monday, March 29, 2010, 12:57 PM  Hi , I guess I need to better understand what, exactly, the " marketing message " is. Are we going to shout from the rooftops that our children are sick with some big, bad, ugly virus(es), but we don't have definitive proof and we don't have a definitive cure? Because I'm not ready to do that with my son and our family. I want to get the word out that our children do not have the A-word, but we have to really think this through and make sure they won't be stigmatized and ostracized because the medical terminology and treatment are not 100% defined. I, for one, do not want to - cannot - risk that my son will lose the a-word diagnosis just yet from the standpoint of the school district and our regional center. I also do not want to run the risk that what he has is likened to HIV/AIDS, and scare potential playmates and prevent him from possibly being able to play team sports. So, I hope you can help me to understand a marketing message that will work for the mainstream, those who really don't care outside of their immediate circles of concern (i.e. people like my own stubborn brother and sister), those who can't and won't take the time to really understand the science behind the explanation. In other words, the message really needs to be softened, even " dummied-down " , for lack of a better term. Otherwise, I'm really and truly sorry, but I cannot be a part of this - yet. Kristy Nardini TazziniTM Stainless Steel Bottles www.tazzini. com kristytazzini (DOT) com Phone: 858.243.1929 Fax: 858.724.1418 P Please consider the environment before printing this email. From: [mailto:jrodrig6605 @ hotmail.com] Sent: Monday, March 29, 2010 8:24 AM knardini@roadrunner .com Subject: Stop Calling It Autism! in Facebook Hi Kristy, As part of creating the Stop Calling It Autism! nonprofit organization we already had in our plans many different marketing strategies to get people to know about this organization. Facebook, Twitter, groups are just a few ways that we can get thousands of people to know about our great initiatives. That's how we can make the noise and eventually a difference. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2010 Report Share Posted March 31, 2010 Hello all, I can identify with Lynn's words: " average person's radar screen. " The world is still very uneducated (I know it's not any one person's fault but it doesn't hurt any less.)  My son's diagnosed with " high functioning " autism because he is verbal.  The other day I had a thought. People with Down's Syndrome have all different functioning levels. Some are very high functioning, some are nonverbal. However, to this day I do not know of any people with Down's Syndrome being self sufficient and truly independent (if anybody does please tell me - I'd love to hear good news about people with developmental disablilities attaining self-sufficiency.) Our hearts always go out to a parent of a child with Down's Syndrome, regardless of their functional level, because Down Syndrome is obvious.  When it come's to my son I not only have to grieve, pick my self up again, and continue the fight to help him - I have to do it alone. The average person, which includes friends and family members, simply don't see his disability as the major issue it is.  I am not saying that I am in the same boat as parents of children with severe autism. I would never pretend or try to say that it's the same thing. I am very fortunate that my child is verbal. He's also been making progress, with the RDI program, that one doctor told me is rarely ever seen in autistic people of any functional level, even Asperger's. (He's made progress in the domains of dynamic intelligence and emotional intelligence.)  But the fact that he is autistic still hurts - bad.  Okay, from now on all my comments will be about : Parents - What worked to help your child's eczema? Did your child's eczema ever turn into a fungal issue (that had to treated with topical functionals, or even systemic antifungals?) Did any of your kids ever have ringworm? My daughter got a spot of ringworm on her head, and I felt like the worst mother ever thinking what did I do wrong? Now I believe it's because I'm colonized and probably my son is too. (And I guess now her.)  Did anybody's child get frequent diaper rashes that had to be treated with antifungals? Both my children did - and I swear I changed them all the time. I even bought the top of the line diapers. When my son was a baby I would change him in the middle of the night to prevent it (He was a good sleeper so if I didn't change him he'd be in the same diaper  I commend everybody, parents and professionals, who have been a part of and is bringing it to light. When I saw the diagram on the Stop Calling it Autism website, my jaw just dropped:  I have HHV6 reactivation and borderline low NK cells.(I also have CFIDS, ADHD, Hashimoto's Thyroiditis, ANA antibodies, and limb numbness and weakness - which is impoving with Imunovir.) My autistic son has eczema, had recurrent ear infections as an infant/toddler.  This is no coincidence. We're on the cusp of something great here. Bridget  From: Kristy Nardini <knardini@roadrunne r .com> Subject: RE: Stop Calling It Autism! in Facebook " ' ' " <jrodrig6605@ hotmail.com> Cc: groups (DOT) com, " Goldberg, MD " <office@neuroimmune d r.com> Date: Monday, March 29, 2010, 12:57 PM  Hi , I guess I need to better understand what, exactly, the " marketing message " is. Are we going to shout from the rooftops that our children are sick with some big, bad, ugly virus(es), but we don't have definitive proof and we don't have a definitive cure? Because I'm not ready to do that with my son and our family. I want to get the word out that our children do not have the A-word, but we have to really think this through and make sure they won't be stigmatized and ostracized because the medical terminology and treatment are not 100% defined. I, for one, do not want to - cannot - risk that my son will lose the a-word diagnosis just yet from the standpoint of the school district and our regional center. I also do not want to run the risk that what he has is likened to HIV/AIDS, and scare potential playmates and prevent him from possibly being able to play team sports. So, I hope you can help me to understand a marketing message that will work for the mainstream, those who really don't care outside of their immediate circles of concern (i.e. people like my own stubborn brother and sister), those who can't and won't take the time to really understand the science behind the explanation. In other words, the message really needs to be softened, even " dummied-down " , for lack of a better term. Otherwise, I'm really and truly sorry, but I cannot be a part of this - yet. Kristy Nardini TazziniTM Stainless Steel Bottles www.tazzini. com kristytazzini (DOT) com Phone: 858.243.1929 Fax: 858.724.1418 P Please consider the environment before printing this email. From: [mailto:jrodrig6605 @ hotmail.com] Sent: Monday, March 29, 2010 8:24 AM knardini@roadrunner .com Subject: Stop Calling It Autism! in Facebook Hi Kristy, As part of creating the Stop Calling It Autism! nonprofit organization we already had in our plans many different marketing strategies to get people to know about this organization. Facebook, Twitter, groups are just a few ways that we can get thousands of people to know about our great initiatives. That's how we can make the noise and eventually a difference. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2010 Report Share Posted March 31, 2010 I love it! Great achronym. Janelle Stop Calling It Autism! in Facebook Hi Kristy, As part of creating the Stop Calling It Autism! nonprofit organization we already had in our plans many different marketing strategies to get people to know about this organization. Facebook, Twitter, groups are just a few ways that we can get thousands of people to know about our great initiatives. That's how we can make the noise and eventually a difference. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2010 Report Share Posted April 2, 2010 I COMPLETELY agree.........a different name or even an acronym for Autism needs to start surfacing in the mainstream media and public eye. We also need to push for a new " face " for Autism (or whatever we end up calling it) because " Rainman " is a common face people picture when they thing of Autism! Although Hoffman did a wonderful job in the motion picture industry, he did a disservice to the children and adults who have recovered and/or are recovering from the " A word! " This website and Facebook are most definitely a good start......... That's my two cents worth! - Sent on the Sprint® Now Network from my BlackBerry® Stop Calling It Autism! in Facebook Hi Kristy, As part of creating the Stop Calling It Autism! nonprofit organization we already had in our plans many different marketing strategies to get people to know about this organization. Facebook, Twitter, groups are just a few ways that we can get thousands of people to know about our great initiatives. That's how we can make the noise and eventually a difference. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2010 Report Share Posted April 2, 2010 There have been at least 2 children die here in Nova Scotia who had 'autism' because they got lost or confused and died of exposure. I am sure there are more throughout the world. Not to mention the kids that are abused or given up because parents don't know what to do with them. This needs to be shown to the media like on Oprah or Dr. Oz. I have sent Dr. G's office a message asking why he hasn't gone public about this scientific explanation for a lot our kids diagnosis but have not gotten a response. What has been keeping this 'A' secret in the closet for this long? What can we do to change this publicly and worldwide? A little girl here started a day called Purple Day for epilepsy and now it is worldwide. Let's do the same thing for 'autism'!!! Stop Calling It Autism! in Facebook Hi Kristy, As part of creating the Stop Calling It Autism! nonprofit organization we already had in our plans many different marketing strategies to get people to know about this organization. Facebook, Twitter, groups are just a few ways that we can get thousands of people to know about our great initiatives. That's how we can make the noise and eventually a difference. Take care, Quote Link to comment Share on other sites More sharing options...
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