If the data on GFCF diets is mixed, then clearly we need more research. My guess, since autism covers a spectrum with a wide variety of biological symptoms as well as the communications issues, is that there is a subset of children with autism who will respond well to a GFCF diet. Yes, I know that children with autism are picky eaters and that change is difficult for them. That doesn't make the diet dangerous, it simply means that a parent or caregiver should make the change cautiously. Part of the reason we haven't implemented the diet yet is we're looking for acceptable substitutes for some of Aidan's favorite foods, like cheese or pancakes. However, since neither milk nor wheat are irreplaceable substances, and it is quite possible to substitute other grain, protien and calcium sorces and keep the diet nutritionally balanced. Since my grandson is lactose intolerant, we think that there's a reasonable chance that this might show some significant change in his overall progress. If it doesn't, there's no harm done. I didn't assume that you were referring specifically to the diet, I simply used it as an example. Saying that intervening in your childs life "might" change who they are is a vague charge and would cripple any parent who listens to it. There ARE parents who just want "normal" children. Some of them ARE being selfish. Some are exhausted from the requirement of caring for a child who is non-communicative, in constant pain, and a danger to himself and sometimes others. We'd love it if Aidan was "normal". As it is, he may never be independant. Do you have any idea of how we worry? What will happen to him when we die? Who will take care of him? We LOVE him. We love him just as he is. But we want him to be healthy, happy, able to communicate easily. (Heck, I worry about my cousin, who is in his 30s and also has autism. He barely talks at all, lives in a group home and works in a sheltered environment. Is he happy? I don't know. Would he live differently if he could? I don't know. What will happen to him when my uncle dies? Well, he should be okay as far as his living situation, my uncle has planned that out carefully, but will he have anyone left to connect to? I don't know. I'm trying to become more a part of his life now to make the transition easier when the time does come.)
I haven't been "defending" Jenny, I've been defending mature and reasoned discourse. I don't think that what you and Ishmael are doing is any better than what Jenny is doing, you're simply doing it on the opposite side. It is just as destructive, short sighted, and cruel towards parents who want to love and help their children.
No, I did not realize that when you said there is no risk in vaccines that you were referring specifically to autism. I took you at what you said. I tend to be very literal like that. I don't believe, for an instant, that Aidan's autism was caused by vaccines. (And he even was in a trial for an experimental 5 in one vaccination.) However, the more research I've done the more I've realized that our vaccine schedule is insane and becoming more so. By no rational measure does the average newborn require a hepititus b shot at birth. I've read studies that, in spite of their obvious intent to do otherwise, have shown a definite correlation between vaccinations and neurological disporders like tourettes and ADHD. Since most of the studies cited by the "mainstream" medical establishment touting the safety of vaccines and poo-pooing the possible link between vaccines and regressive autism were done by the CDC or others with a vested interest in keeping the vaccination machine going, forgive me for being skeptical of their results. Even through I don't claim regressive autism in Aidan's case, I don't know for sure that it didn't happen either. Like the majority of American children he recieved a Hepititus B shot at birth. He was 3 weeks premature and the shot DID contain thimerosol and aluminum. How can we know whether or not that caused a permanent change in his brain? How can you know? Answer, you don't. You don't think there's a connection, but you don't really KNOW. How will you feel if, like the tobacco industry, the vaccine machine actually IS shown to have willfully hidden and masked detrimental findings. I'm not saying anything one way or another, I'm just saying that nothing has actually been proven by either side, and I'm not closing my mind. I do NOT trust the medical establishment. Too many in my family are in research science or medicine for me to have any illusions as to their altruism.
You frequently accuse people of "lying" about autism. I find that to be a statement of fact where no fact has been shown. They may refer to autism in ways that you disagree with, but that does not make them liars. They may be wrong in their characterization of autism, but that doesn't make them liars either. It may be that the "shell" children they refer to, the ones that may or may not have been "reclaimed" through chelation or diet or whatever, never had autism at all. But at this point in time, as far as you know, they are being completely honest in what they say. To attack a person's veracity without proof because what they say is contrary to your own experience is really an attack on your own credibility. I have read many, many personal stories of parents dealing with children who really were developing perfectly normally who suddenly regressed. Hannah Polling is a perfect example of that kind of case. Maybe what she and the other children with "regressive" autism isn't autism at all. Right now, however, it is considered autism and she clearly wasn't born that way.
I speak for myself. I speak for any other parent (or grandparent) who identifies with my situation. I don't speak for parents of children with regressive autism. I don't speak for you or Ishmael. I don't speak for anyone who doesn't identify with my own understanding of the autism debate because, unlike others here, I don't claim to be an absolute authority. I appreciate your encouragement to continue to work with Aidan, rest assured we will do so. However, I wonder just HOW you determine who is being selfish in working with their loved one with autism and who is being loving. I wonder where you became an expert that is somehow able to determine that? I find being judgemental of people to be a slippery slope that leads one to arrogance and a closed mind. Jenny can be excused for such excess, she doesn't claim to be a scientist. Anyone who does claim to be a scientist, however, should act like one, in my opinion.
Neither Jenny, nor Autism Speaks, nor DAN nor any other person or entity connected with autism can be held responsible for a parent who kills his or her child. Those people are responsible for their own failure to adjust to the reality of their child's condition and to find appropriate solutions. There's a man in my area who is on trial for killing his daughter -- his neurotypical daughter -- who does he get to blame for it? No one. He was an abusive man and he killed an innocent child. The woman who suffocated her 4 year old daughter with autism is no different.
All I am saying is that anyone who feels civility is "for tourists and politicians" has already shown a lamentable lack of judgement and understanding and anything they say from that point on is suspect. This, you can't call someone on here names, but we can call anyone else names, mentality is baloney. If you can't hold yourself to the same standards of civility that you wish to be shown, then you have no opinion worth listening too. You aren't showing your decisive, hard hitting insights, you've simply shown that you are a child with a child's understanding of disagreement. (You said something mean to me; you're a big doody-head!) If that is truly what this board is about, then I'm in the wrong place. I'm happy to be shown research I haven't seen. I'm happy to discuss what I have concluded in the matter of autism and to be educated as to information I've missed. I would be happy to find ANY well set up study that actually puts the vaccine debate to rest. I am NOT happy, however, to find a site where people feel that personal attacks and name calling are acceptable and appropriate methods of disagreement. I am even more unhappy when that is coupled with a glib judgement of people you've never met because you simply "feel" that they do not accept their loved ones with autism. Perhaps, Ishmael, civility is a waste of time in your world, but in mine it opens up lines of communications. Of course, that might be the problem. Perhaps you aren't interested in communication, you simply want to make your proclamations and have them accepted by all. Here's a newsflash, that isn't likely to happen.
04 Oct 2008, 4:08 am
