Thursday, November 1, 2007

My autism timeline

Here is a timeline of my own autism (mercury poisoning) journey.

1967—I realize there is something wrong with me. I’m about eight years old. While I can communicate fine when I need to, I am pretty much unable to make small talk with almost everyone. I also have the odd habit of walking around on my toes. People ask me if I want to be a ballerina. I say no, because I don’t.

1970—I learn about the condition called autism. I wonder if I might have something related.

1977—I look up autism at the Cleveland State University library, where I am an engineering student. I learn of the studies on DMG and vitamin B6 conducted by Bernard Rimland. I try DMG, it doesn’t seem to help me.

1978—I meet my future husband. I tell him I think I have something like autism. He tells me I’m just quiet and that is fine with him.

1989—Our first child, Erin, is born. (after I receive a Rhogam shot, as I am Rh negative) She screams like someone stuck a fork into her from day one, every single waking moment that she isn’t eating. When she is nursing, she writhes, squirms, screams in between swallows. Doctor tells me she is just colic, it happens sometimes. (The doctor and I have to shout at the top of our lungs at each other when we converse, in order to be heard over the screaming of my daughter.)

1992—Erin’s preschool teachers tell us that she “has problems we don’t feel that we are qualified to deal with.” She is completely withdrawn in school. Will play endlessly with one toy, but not at all with other children. Has various other symptoms of autism, but no one has yet called it that. She sees a gastro intestinal specialist because she is withholding her bowel movements, sometimes for as long as ten days at a stretch. It is he who first suggests to us that she might have autism. It isn’t something any of us wanted to hear although I had my suspicions. I am horrified, but relieved to learn that subsequent evaluations leave her undiagnosed with any autism spectrum disorder.

I speak with Bernard Rimland, of Autism Research Institute. I tell him I’m interested in his studies, as I’ve got a daughter who it was suggested might have autism, and I myself have often felt I might have something related. He explains to me that they have heard from a great many parents of children diagnosed with autism who feel that they themselves have something similar. (as with the parents of children diagnosed with ADD and ADHD). I ask him why, if vitamin B6 is supposed to be so beneficial, the traditional medical establishment doesn’t recommend it. He tells me that he doesn’t know. He tells me that it almost seems to him, at times, as though they don’t want the cause of autism to be found. I ask him who ‘they’ are, and he tells me that there are a lot of researchers getting government money, and that it’s these people he is talking about. He says nothing to me about vaccines. I’m left wondering what is meant by his mysterious statements. It’s not until years later that I find out.

I begin taking large doses of vitamin B6. It seems to help me quite a bit.

2000—Erin is mainstreamed in school, where she is doing well. She was in the gifted program for a short time (in about the third or fourth grade), but taken out of it at her request. She does have problems with being harassed a great deal by her classmates. She is told, by the HMO mental health professional, to ignore them and they will stop harassing her. She does ignore them, but they don’t stop harassing her.

2003—Erin is doing a report for her science class on Porphyria. She gets sidetracked while doing her research on this topic and she comes to me one day and she says to me “mom, I think I have lead poisoning.” I say to her “no dear I don’t think so. We can have you tested but we don’t have any lead pipes or old paint, and that’s how people usually get it I believe.” She pauses for a moment, and then she says to me “well then, I think I might have mercury poisoning.” I, having heard nothing at this point in time about concerns about mercury in vaccines, brush off this concern of hers, as well.

2004—I learn about, and read, Evidence of Harm. I realize that the complaints Erin has seen the doctor for over the years are all symptoms of mercury poisoning. The skin rashes. The fatigue. The obsessive compulsive behavior. The menstrual irregularities. The social withdrawal.

2005—I begin speaking about thimerosal, the mercury preservative used in vaccines, on the internet chat rooms that I had frequented for many years. I’d gotten to know the regulars and the moderators on Undernet political chat rooms, both left and right leaning. I’d lurked a lot over the years but also joined in on many debates. I had always gotten along amicably with everyone there, until one day when I said the words ‘thimerosal’ and ‘autism’. Suddenly I found myself ridiculed, then kicked, then banned for longer and long periods of time. No matter how polite I was, no matter how objective, no matter how much I tried not to speak of it unless someone else brought the topic up because I knew it was a hard thing for other people to want to face up to (the possibility that the medical authorities and the government authorities poisoned children), I was banned for increasingly longer periods of time.

Spring 2007—I contact a local autism organization. I tell the local chapter president I have concerns about mercury in vaccines, and that I am interested in volunteering to help the organization. It is not Autism Speaks that I contact, because I already am aware of the position that their organization takes, publicly, regarding the cause of autism. (“the only thing parents of children with autism do is they have bad genes”.—Allison Singer, of Autism Speaks) I meet the leader, Marian, of a local ASD parent support group, called AutismNE, who is interested in biomedical and dietary intervention.

April 2007—I show up one evening outside of the House of Blues in downtown Cleveland. There is to be an Autism Speaks sponsored benefit there, and I want to hand out my flyer

which has information about thimerosal that I feel is important for parents of children with autism to be aware of. I am told by the organizers of the event, inside of the House of Blues lobby, that they would be happy to leave my flyers on their information table. I tell them that I would prefer to hand them out individually to people on the sidewalk who are coming into the venue. I am told by the organizers of the event that I will have to leave. I refuse, as I can’t understand what it is that I am doing that ought to bother anyone, (I would approach people, wearing my ‘Autism—It’s no Mystery, it’s Mercury’ tee-shirt, and I would ask them “would you like some information about vaccine safety?” and if they said “yes” I would give them my flyer and if they said “no” I would let them pass), and they tell me I will be arrested if I don’t leave. A police car and two police officers are called out, and they tell me that I will be arrested if I don’t leave. I refuse to leave, and the police chief is called out. He tells me that I am within my rights to stay and hand out information so long as I don’t obstruct anyone. He lets me stay, as I never was threatening or obstructing anyone. Someone with Autism Speaks says to me “do you have a child with autism? Do you know what it’s like to have a child with autism? Can you understand? We’ve worked very hard for this event, and you’re spoiling our evening. Can you understand that?” I tell her no, I can’t understand why what I am doing is spoiling her evening, and I stay to hand out information.

Summer 2007—I see a post on the local parent support newsgroup from Shari Goldberg, local chapter president of Autism Speaks, soliciting for some Autism Speaks sponsored event. I write a post explaining to the newsgroup what happened to me on the night of April 21, outside of the House of Blues. I try to post this to the forum but cannot. I speak with the moderator, Marian, and I am told that sometimes there is a ‘glitch’. She agrees to forward my post to the forum, as I don’t seem able, for some reason, to post it.

A day or two later, Shari Goldberg, of Autism Speaks, denies publicly on the AutismNE forum that anyone tried to have me arrested outside of the House of Blues benefit concert.

October 2007—I bring up the topic of the House of Blues arrest attempt, again, on the newsgroup. I’ve just witnessed Autism Speaks raise half a million dollars, from thousands of ill-informed walkers at their September walkathon—money which I know will be used not to find the cause of autism, but to further try to convince people that the problem is strictly genetic in origin, and to try to silence anyone who might suggest otherwise. Ms. Goldberg again publicly denies that any arrest attempt was ever made.

I obtain, from the Cleveland police department, the incident report that they have on file for that evening. I try to post on AutismNE a url for a site where I’ve uploaded scans of these documents,

because I feel that since Ms. Goldberg is lying to me and about me publicly there on the forum, it isn’t unreasonable for me to expect that I would be able to make some attempt to clear my name, publicly, on that forum. There is another ‘glitch’ and my post does not show up on the forum. This time, when I speak to Marian on the phone, I am told that she will not post what I have to say. She feels that I should ‘work with her’ to find something that is more acceptable to Ms. Goldberg, something that she could post on her newsgroup. She also thinks that the things that I have to say are not positive enough, and that I should only post positive things. She suggests that I limit my posts to descriptions of things that I’ve done that have helped my children, and not post anything ‘disturbing’, as the parents of children with autism are already stressed out enough as it is.

In short, I find that the censorship that I experienced on the internet, by anonymous individuals, continues in real life. This time, however, I’m aware of who the people are who feel the need for the censorship, and I can make others aware of who they are. They are no longer anonymous, nameless and faceless individuals on the internet.

Now—I’m continuing to disseminate information about thimerosal in vaccines and autism, and particularly thimerosal in flu vaccines (which is still present there in toxic amounts). I also intend to attend monthly ASGC meetings (Autism Society of Greater Cleveland. I feel comfortable enough with their organization as they are linked from the Generation Rescue website, and I’ve never seen any objectionable, offensive public statements regarding the cause of autism from them), in order to learn more about autism, and about what I might do to help my own children (as I believe that three of the four are affected in some way by what I prefer to call mercury poisoning) as well as others diagnosed with autism.

What I would really like is to see the vast sums of money that are raked in by Autism Speaks, and then given as grants to scientists who haven’t been able to help a single child by looking for the elusive ‘autism gene’, put instead toward helping families get the treatment for their children that they feel is the most beneficial, whether it be ABA or hyperbaric oxygen or chelation or diet and nutrition advice. I also think it is very important that state laws which govern insurance coverage are changed so that parents who are now denied the help they want and need for their children will no longer be denied coverage for their autistic child.


N Hubley said...

Why do you suppose there isn't any credible evidence that links mercury to autism?

Heraldblog said...

Children born after 2001 received far less thimerosal than kids born in the 50s. Seems like the incidence of autism should be dropping.

donna bateman said...

I believe the "cause of autism" will never be found---because there is no one single cause. Autism is only the symptom of a brain injury. Some people are injured by vaccines, some by difficult births, some by leaky gut, etc. Since there cannot be one single cause for autism, I believe the "cure" must be looked at from the same angle. We need to look at the brain, NOT THE SYMPTOMS. This idea of brain injury instead of the label of autism also explains why there are such wide variances on the spectrum. There IS hope for parents whose children have brain injuries.

Heraldblog said...

Fine, but you call your autism "mercury poisoning". Do you believe that children born after 2001 are less likely to have "mercury poisoning autism" than children born prior to 2001?

Joseph said...

Cerebral Palsy is basically a brain injury. There's no cure for it.

Robin Nemeth said...

If you read my flyer you'd see that at least one study shows that the amount of thimerosal injected into babies, relative to body weight, hasn't gone down at all in recent years. This is because there are more flu shots, still toxic, being given to pregnant women and to babies and children.

Why do you suppose they've finally removed thimerosal from most childhood vaccines, if they've any concerns about it, but they continue on with injecting twenty five micrograms of thimerosal into babies with every flu shot?

Heraldblog said...

So why hasn't the incidence of autism in the 3-5 yr old cohort declined?

Robin Nemeth said...

I haven't gotten the funds to do a scientific study, so I'm only speculating. How about more exposure thru other sources, such as coal plants, or brush fires, or light bulbs, or amalgam fillings or filling replacements?

Or, perhaps it's merely that there's been better diagnoses.

Heraldblog said...

Bingo! Better diagnosis.

Robin Nemeth said...

I've been trying to find out some things about the safety of flu shots.

Heraldblog said...

You're looking in all the wrong places.