Grandin Is an Inspiration, but She's Not at All Typical
Age of Autism Media Editor Anne Dachel had a letter to the editor run in the Wall Street Journal this week on their article, Life Among the Yakkity Yaks:
Bari Weiss gives us some information in "The Weekend Interview with Temple Grandin" (Feb. 20) that should at least raise concern among parents. "As many as one in 110 American children are affected by autism spectrum disorders, according to the Centers for Disease Control." (In the 1970s, autism affected only one in 10,000.) "Boys are four times more likely to be diagnosed than girls. But what causes this developmental disorder . . . remains a mystery."
Maybe we should pay attention to Ms. Grandin's comment, "Scientists need to study 'the kids where they seem to have language and then they lose it at 18 months to two years of age.' She adds: 'I've talked to too many parents that have talked to me about regressions that I can't just pooh-pooh that off.' "
Ms. Grandin notes that severe autism has increased and she cites toxins as possible factors. The CDC now acknowledges that the increase may be due to some unknown environmental factor. However, the CDC sees a problem but not a crisis with autism.
Ms. Grandin reports that GFCF diets can help, yet health officials deny they're effective in reducing signs of autism.
Most important of all is the fact that Temple Grandin's story doesn't come close to what's ahead for most children with autism today. The vast majority will never hold jobs successfully, even those with Aspergers. Ms. Grandin may be working on her fifth doctoral degree and be a national figure, but most Americans with autism will each cost the taxpayers at least $3 million for lifetime care cost, according to a Harvard study from several years ago.
I'm happy for Ms. Grandin's success and her story offers hope, but we cannot continue to ignore the reality of autism for so many children in this country, children who can't talk, can't even make eye contact, and are in diapers as teenagers. We can't continue to ignore the very real autism epidemic.
Anne Dachel
Chippewa Falls, Wis.
http://www.ageofautism.com/2010/02/grandin-is-an-inspiration-but-shes-not-at-all-typical.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+ageofautism+%28AGE+OF+AUTISM%29
February 26, 2010
Grandin Is an Inspiration, but She's Not at All Typical
Re: "I'm happy for Ms. Grandin's success and her story offers hope, but we cannot continue to ignore the reality of autism for so many children in this country, children who can't talk, can't even make eye contact, and are in diapers as teenagers. We can't continue to ignore the very real autism epidemic."
In toxic poisoning there is always the correlation to severity of damages based on the level of toxicity and the total amount of exposure. The vaccine schedule during Ms. Grandin's childhood was very limited, especially in comparison to the massive schedule which started this epidemic of autism. I don't know if the vaccines were responsible for producing her autism or not, but thanks to all of this poison being injected in little babies today, and the lack of awareness regarding recovery therapies in the public and medical system, tragically the vast majority of autistic children will never have the capacity to reach her potential of such high level functioning.
Promoting SSRI's for adults is one thing, but for children with autism this is big time risky business. Just one example of many, all of the older children involved in school shootings were taking SSRI's, and it is known that the potential damages are worse for younger children whose brain is not fully developed, so the risk to children with autism is even greater.
I took most of the SSRI's on the market myself and the end result was that in the beginning there was improvement, but in the end I was worse off mentally than when I started. SSRI's make the limited amount of seratonin available in the body to function more effectively, but they do nothing to address the CAUSE, so in the end when finally all of the seratonin is depleted, the person is S.O.L. Due to the Gut Brain connection, the first solution for autism is to solve the intestinal issues. The other therapy that is safe is simply to provide the precursor amino acids which produce the neurotransmitters, such as L-tryptophan for seratonin. I was finally able to restore my levels of depleted neurotransmitters by taking L-tryptophan and also a product called "Neuro Replete" which was recommended to me by a naturopathic doctor. Although since my brain cells were carrying a toxic load due to the solvent gas that I had breathed in, I finally cleared that out by breathing in diffused therapeutic grade essential oils, which has also helped my grandson tremendously---however the difference with him is that he also has an extremely high level of aluminum in his brain thanks to the vaccines. So whether mercury, aluminum. lead, etc. this has got to be REMOVED in order to increase mental capacity, and there are multiple safer chelation methods other than the drug route.
Here are a few quotes regarding neurotransmitters and brain chemistry from the Neuro Replete website:
"Prescription drugs that work with neurotransmitter do nothing to increase the over all number of neurotransmitter molecules in the brain, they work by moving neurotransmitters from one place to another and in the process may actually deplete the neurotransmitters. The only way to prevent neurotransmitter depletion is to give the body the nutrients it needs to build neurotransmitters."
"This formula was perfected in medical clinics in the USA using data base experiences of hundreds of medical patients from hundreds of medical clinics. For optimal results it is recommended that that original NeuroReplete be used with RepleteExtra and CysReplete."
More Info Here:
http://www.chknutrition.com/Neurotransmitter_Chemistry.htm
Posted by: Autism Grandma | March 01, 2010 at 06:55 PM
Food Allergies
There is a better way to test for food allergies other than traditional "prick testing". Check out www.enterolab.com . Dr. Kenneth Fine spent years researching food allergies, he's published in The New England Journal of Medicine and the Journal of Gastroenterology, and he has patented his testing methods and procedures. We put our son on the GF/CF diet after receiving our "positive" results for both Gluten and Casein. At the time, he was 5 years old and had a receptive speech ability of less than 18 months. In the first year of the diet, his receptive language increased to peer level. That was 4.5 years of improvement in one year. His expressive speech continued to be delayed, however, but this allowed us to learn of a new diagnosis of Apraxia of Speech and Dysarthria that was originally attributed to Autism. We credit the diet for this massive improvement in speech. The "targeted" apraxia therapy for his expressive language delays is working.
Additionally, after our kids allergies were confirmed, the DNA analysis (done outside of Dr. Fine's lab by the Red Cross) also suggested that my wife and I were likely allergic. My wife and I were tested, wouldn't you know it ... I was 35 years old and had NO IDEA that I had been "allergic/sensitive" to wheat and dairy my ENTIRE life.
For those who think you can "see" an allergy ... I respectfully disagree. Food allergies are REAL.
My family has been on this diet for 2.5 years now and the ONLY unacceptable replacement for a food item has been "melting cheese". We enjoy fresh baked breads, cereals, waffles, pancakes, french toast, pot pies, pecan pies, pizza dough ALL Gluten-Free and delicious.
Casein-free butter, Almond milk, Coconut milk creamer for coffee, Coconut milk ice cream, soy and almond cheeses ... delicious !!!
If anyone tells you this diet is impossible ... they're wrong.
So many therapies and approaches have seemed like "shots in the dark" for us in the past. And that has been frustrating to say the least. I'm thankful that this diet has made a difference for my family. As sensitive as my son's skin is ... prick testing might have told us he was allergic to everything. And I'm sure they'd have been more than happy to sell us a monthly regimen of allergy shots to take indefinitely.
Posted by: CT | March 01, 2010 at 10:08 AM
Benedetta we are on the same page here. It sounds like you have been down a long road.
"The first person to tell this to me was not a doctor - but my own mother." It is nice not to just have support , but very nice to have a mother that sees things and cares enough to help.
All the best...
Posted by: Nick | February 28, 2010 at 03:10 PM
Yes, Nick;
You are right on all accounts, thankyou for taking the time to go into this, this was a lot of work you did for not just me but others to help them understand.
What you said I agree with.
The first person to tell this to me was not a doctor - but my own mother.
My mother told me that fasting and then slowing adding one food at a time was about the only way to tell a food allergy.
Also around 20 years ago the cholesterol thing was going on (and still is)
Eat all the carbs you want just don't touch fat. Of course at age 30 my husband has high cholesterol.
We had the doctors all saying heart diet - fat free/oat bran in every thing.
We have Rimland saying glutein free/cassein free (human body was never made to digest grass protein, I agree). And then the Ketogenic diet which only works on children and if the child misses this opportunity that child will be an epileptic all it's life. On top of all this, when it came to seizures the docs were saud "everything is fine" when I knew he was having absentee seizures.
Atkin's and the Protein Power book came along and I read all them. My father had his heart attack so I am back on the oat bran/no fat and scared.
Then Atkin's resurfaces, inflammation is the cause of heart attacks. Inflammation is pushing out the blood vessels and then and only then does the cholesterol collect and block. Atkin's can cure 39 percent of epileptics and maybe adult epileptics too. Atkin's discourages milk and wheat because of carbs (that get those that are allergic too) So simple - what made it so hard to begin with????
Ah gee Now it sounds so simple.
Posted by: Benedetta | February 28, 2010 at 01:06 AM
Benedetta you mention that you did have food allergy testing done, but you may or may not know, or have known then, that traditional food allergy testing may not detect certain immune responese to some foods. Here is a part of an article about this.
"In other words, they conclude that “shooting in the dark” with a radically restrictive diet and then adding challenge foods one at a time is just that: radical. In their previous paper (Lancet, 1985) they also note that it is potentially dangerous. In another article, published in Annals of Allergy in 1994, entitled Foods and additives are common causes of attention deficit hyperactive disorder in children [Boris, Mandel. Annals of Allergy, vol. 72, May 1994, 462-468], the authors found that four out of nineteen children who showed food sensitivity and improvement with the removal of the offending foods were non-atopic. That is, they would have manifested no classic “allergic reaction” to the placing of these foods under their skin in the author’s elegant “double-blind placebo controlled food challenge (DBPCFC) test.” To make sure this point is made adequately: if these children had been tested by the best board-certified allergist that could be found the four food sensitive children in this study – representing a statistically impressive 25% of all the children in the study and who had documented improvement when their food allergies were dealt with - still would not have tested positive to the foods to which they reacted based on conventional “skin prick” testing; nevertheless, they still would have had behavioral and concentration difficulties based on food sensitivities. To make sure that this point is understood, let me emphasize this: these kids would not have been “skin-test positive.” They were therefore not manifesting Ig-E “immediate effect” allergic responses. But they were manifesting an allergic response. The most recent and thought provoking article in the literature is from June 2003. In their paper, Sabra, Bellanti and their colleagues review “IgE and non-IgE food allergy” [Sabra, Ellanti, et al. Annals of Allergy, Asthma, and Immunology 2003;90(Suppl 3):71-76]. They observed that non Ig-E mediated mechanisms may be at work. They note: “The gastro-intestinal tract serves not only a nutritive function but also is a major immunologic organ. Although previously thought to be triggered primarily by an IgE-mediated mechanism of injury, considerable evidence now suggests that non-IgE mechanisms may also be involved in the pathogeneses of FA (“food allergy”). The authors reviewed data collected from MEDLINE searches analyzing multiple syndromes, which could be caused or exacerbated by food allergies. Among the syndromes analyzed was “attention-deficit-hyperactivity disorder and behavioral disorders [sic].” Their conclusions were as striking as the original work by Millman, over 29 years previously. They concluded: “The results of this review allow the construction of a central, unifying hypothesis for a new classification of FA as follows: the clinical manifestations of FA, expressed in affected target organs, may be the result of immunologic injury mediated by interaction of food antigens with contiguous elements of mucosal associated lymphoid tissue. These appear to be modulated by relative imbalances of the Th1/Th2 paradigm, which may be the ultimate determinant governing the expression of FA as IgE-mediated, non-IgE-mediated, or mixed forms of IgE/non-IgE mechanisms of FA.” In plain English, that means that you can have allergic reactions to foods causing ADHD symptoms (and other ones, as well) that cannot be found out by doing scratch testing or injecting antigens underneath the skin to see if one has an immediate reaction. Indeed, IgG allergic reactions are delayed ones!"
Full article: http://www.betterhealthusa.com/public/336.cfm
Posted by: Nick | February 27, 2010 at 05:45 PM
Yes Nick:
I wished I had listened to him about the diet. But I even when to an allergy specialists,(spent time and money and was helped a lot by them) The allergy doctors did test food allergies. Nothing came up except for tomatoes for my daughter.
I think Rimland was right, some kids do have allergies, but for my kids they needed off all the carbs. Would a CF/GF diet have helped - probably- it would have reduced the carbs.
This was happening 20 years ago and you would not believe the mis-information on the internet and every where else. I was here in Kentucky and Rimland was way out in that - place called Californa. You know Baker Field,those funny named streets in San Francisco named in Rocking music - hippies! Hard to know since I never met or talked to the man if he was or could be trusted. I read what he wrote though - ever word!
Now I did do the ketogenic diet all on my own (hard) - another hair brain idea from someone living way out in funny California - it was a film maker who - had rediscovered an old diet for epileptics.
But there was not a whiff of why it might work. People need a little knowledge of why something might work esp. in the early stages. Rimland did explain years ago on his website why zyloft might work and it made sense, that is why I confronted the peds to get it done. Rimland said it did not cure - it protected what was left from further damage of an on going auto immune disease.
Posted by: Benedetta | February 27, 2010 at 11:53 AM
Benedetta wrote: "I did not see food allergies in my children."
I am not sure what you mean when you say you did not see allergies, but you may be expecting to see symptoms that won't neccessarily be there with Gluten and casein "allergy".
One view, which I think is true, is that the Gluten & Casein free diet helps some a great deal. Others may only be helped moderately and some little or not at all. But, in many if not most cases where it is a problem classic allergy symptoms may not be seen. It isn't hives, itchy eyes, or sneezing that is an indication of problem, but GI issues in some cases leading to a mental effect and I would believe that often the GI issues with these foods may not produce enough chronic GI issues as to be seen as that important. But it may be that the there is a specific type of damgae and immune response that is gut related as to set up immune respones in the brain. That is where the cytokines come to be involved. In my wife's case it was involved with GI issues, but it took time to resolve these issues after the gluten and milk were stopped. Her system was very sensitized to immune responses and stopping the offending foods was a needed piece of the process in reversing the problems. She has been on Enhansa for a while and it clearly helps her. This is why the possible anti cytokine effect of some SSRI's may be limiting, to some degree, immnune related brain effects.
Posted by: Nick | February 27, 2010 at 02:28 AM
It's hard to guess what Dr. Rimland would say regarding the new data on SSRIs if he'd been around to see it. None of the news has been good: http://www.ssristories.com/index.php?sort=drug&p=
Dr. Rimland was never afraid to change his opinion in the face of new information-- just one of a million reasons he's missed.
Posted by: Gatogorra | February 27, 2010 at 12:39 AM
It was Rimland that said to use SSRIs - zyloft
Posted by: Benedetta | February 26, 2010 at 11:30 PM
Zyloft is one of those SSRIs I did use on my son.
I did not go along with Rimland's diet. I did not see food allergies in my children. Although I did go through a soul searching, looking hard for evidence they were and considered what he said. I did say to use zyloft to protect the brain. AND I did for about a couple of years. 9 and 10 maybe even untill he was 11.
Could it be that it did help in the end and he progressed to better speech to PDD-NOS to later aspergers????
I don't know.
Posted by: Benedetta | February 26, 2010 at 11:29 PM
Many people have commented on Grandin's seeming promotion of antidepressants and the fact that she seems to be arguing against treating children with "less severe" forms of autism. No one in the recovery realm is unappreciative of her arguments for treating severe autism. It's brave. But do children with less severe autism deserve nerve damage, increased rates of cardiac death, early prostrate and other reproductive cancer, early onset Alzheimer's, kidney disease, higher rates of diabetes and all the other painful and deadly illnesses which most likely relate to chronic toxicity and untreated mitochondrial disease?
I'm glad for Grandin that she doesn't report suffering from physical manifestations. I'm glad she hasn't gone nuts and killed anyone or herself on antidepressants as well. I'm just afraid others won't be so lucky.
Posted by: Gatogorra | February 26, 2010 at 11:03 PM
The quote below is from the article linked at the bottom. It talks about Arthritis, but the cytokine relationship is mentioned too. It seems very plausible to me that the benefits Grandin obtained may have been due to a reduction in brain related immune responses.
"Prior studies have shown that patients with depression who respond to treatment with SSRIs display a reduction in cytokine levels (signals that can induce inflammation), suggesting a connection between SSRIs and the immune system."
http://www.sciencedaily.com/releases/2010/02/100225082441.htm
Posted by: Nick | February 26, 2010 at 09:23 PM
Temple also mentioned that she has had great success with antidepressants. The very suggestion of which seems to infuriate a lot of parents. I'm surprised no one has addressed that fact here.
Posted by: Frank | February 26, 2010 at 06:52 PM
Do you always believe what health officials tell you?
I see the GFCF diet just like I see someone that is allergic to strawberries. They don't eat strawberries because they know they are allergic to them. Maybe parents don't know if their child is allergic to gluten but it most likely will not hurt the child to try taking it out of their diet. If it improves behavior; great! If not, then at least you have tried something.
It sounds like you are pretty doom and gloom when it comes to the future of children with autism. While Temple may not be the norm it's something to shoot for. If we hold high expectations for our children then they are more likely to achieve them because we are going to try everything we can to help them achieve those goals.
Posted by: Outside the box | February 26, 2010 at 11:45 AM
Watching a doctor a while back give a speech on classic autism and aspergers. he said that there was a 15 year study (on living independently and/or holding a job) done on autism and aspergers, less than something like 24% of aspergers can either live independently and or hold a job, can you guess what the figures were for classic autism? 0% for classic autism.
Posted by: StephM | February 26, 2010 at 11:33 AM