Discovering I Was Toxic
While watching “The Simpsons” four years ago, a commercial appeared for a FOX News report on autism and a vaccine preservative. I stayed tuned for the program, and what I saw and heard shocked me. The reporters were interviewing angry parents of autistic children who said thimerosal, a mercury-based preservative used in childhood vaccines, had caused their children’s autism. According to the show, a bottle of thimerosal is too dangerous to even open. One child was injected as an infant with a dose of mercury that would be unsafe for a 250-lb adult. A mother lamented, “It’s a neurotoxin, it’s one of the most poisonous on earth.” A group of parents of autistic children, was asked, “How many of you feel thimerosal caused your child’s autism?” I vividly remember everyone’s hand going up.
A person from the other side of the argument was also interviewed for the show. That person was Dr. Paul Offit. He seemed very assertive - almost aggressive. When asked if there was a thimerosal-autism connection, he exclaimed, “The answer is a consistent, clear and reproducible NO!” The main reason I had for believing his denial of the connection was his position at Philadelphia Children’s Hospital. Other than that, I did not know who he was or what he did, much less the $1.5 million grant his research chair received from Merck, his co-patent on the Rotavirus vaccine, or his vaccine earnings which he later said were, “like winning the lottery.”
The reporters then interviewed Dr. Mady Hornig of Columbia University, who had injected mice with thimerosal. Here was a poison given to humans causing autistic behavior, that when given to mice was discovered to do the same.
I found this difficult to comprehend. I was 16 at the time and knew I had Asperger Syndrome and received vaccines. I started worrying about my own problems, thinking, “If thimerosal can give someone severe autism, it could have given me Asperger’s.” But at that time I was unwilling to openly accept that I even had Asperger’s, and I locked the memory of the show deep down inside.
Throughout high school and into college I would keep my diagnosis to myself. “Asperger’s” was just a label with some symptoms attached. Without a reason for my condition, my diagnosis always seemed incomplete.
Part of my problem with my label was the kind of treatments I received for my condition. Since medications gave me terrible side effects, my mother gave me handfuls of vitamins for most of my life, and later B-12 injections which helped the most. I always wondered why I needed them. It didn’t make sense that Asperger’s was merely part of who I am, when I was given all these vitamins. I shouldn’t naturally have a vitamin deficiency. She also took me off dairy, took me off wheat for a long time, put me through Auditory Integration Therapy, and took me to a neurologist who glued electrodes to my head to test for seizures. I felt very different, not just because of my condition, but because of what my mother did to treat it. Everyone else I knew with Asperger’s was on medication.
Another reason I had against disclosing my condition was the prevailing ignorance about autism. I remember a classmate asking what autism was, and someone responding, “It’s a mentally retarded thing.” I also had a friend while growing up whose older brother was severely autistic (whom I later found out regressed after the MMR). In high school, being moved into mainstream classes with neurotypical students while knowing I was on the autistic spectrum made me feel so different from everyone else. But my fear of disclosure would eventually change.
When my mother mentioned chelation last summer, I finally told her about the news report. She said she believed thimerosal was responsible, having known about it since I was 12. When I asked why she hadn’t told me then, she said she didn’t want to upset me; I had frequent meltdowns at earlier ages. The news program I saw was disturbing. Nevertheless, I began to see it as good news: relief that I knew both what had been causing my problem and that it wasn’t “me.”
However, not everyone sees it as such. Neurodiversity advocate Kathleen Seidel was quoted as saying “Did it ever occur to you that someone might object to having their family members labeled as inherently toxic?” Perhaps we should let the family members decide for themselves. For me, the thimerosal-autism link was a logical explanation for my condition, and it was reassuring to know that my issue had nothing to do with who I am. This allowed me to accept my condition and disclose it to others.
By sophomore year of college, I went from telling nobody about having Asperger’s to telling everybody – friends, cousins, coworkers, even people I’d just met. I also explained the mercury issue, and most of the responses have been totally sympathetic and supportive. My disclosure of having Asperger’s didn’t draw negative attention as I feared. One aspect of my life definitely got easier, because now I feel that I can talk about my Asperger’s.
While it’s good to know the cause of my problems, as well as having the freedom to discuss them with others, what has been very disturbing was learning about the tremendous amount of suffering caused by the health authorities. They were given the huge responsibility of protecting people from defective drugs, but instead, completely betrayed the public trust. I am both overjoyed at the explanation I have for my condition and angered at the people who are responsible. I spend my spare time researching this subject, and become even more interested with each new fact I learn.
This new information also allowed me to take a more proactive approach to my health. Freshman year, I would often forget to take my vitamins. Now I make sure I always take them, along with finding other ways to reverse the damage. I never thought one news program would have this great an impact on my life.
Jake Crosby is a student at Brandeis University who is majoring in history.
Jake,
I enjoyed reading your article. Mercury IS as well as aluminum to blame for neuoroligical damage. Iodine is actually a VERY VERY powerful chelator of heavy metals including mercury. It is also vital for good health. One of the best forms is Lugol's solution. It would possibly benefit you greatly. Definitely worth checking into. I take it everyday as well as give it to my family.
God Bless,
Deanna
Posted by: Deanna Chesebrough | January 19, 2009 at 03:35 PM
Alyson thank you for clarifying your position. Donna Williams was of a great help to me when my son 1st regressed into autism. Someboby Somewhere and Nobody Nowhere were the 1st books I read. I was incredibly greatful for her view. As she's grown older and written more she had grown more of an understanding of the environmental effect on her autism. I knew my son regressed because of physical causes but like Donna I find more and more outside causes affecting my son in ways that increase his autism symptoms.
For my son his immune system is married to his autism. He was not born with issues of eye contact, impared speech, repetative behaviors, it was not painful for him to socialize with me or his sister. It was natural, he had a very different nature from birth than what occurred after physical decline following vaccination. He's still the same inside but what changed was his ability to show me consistently. But I realize that not all cases of autism have begun the way my son's has. I appreciate entirely the efforts of yourself and from other adults on the spectrum that are trying to attain an acceptance or understanding in society. We most certainly want our children to have a sense of belonging and acceptance no matter where they end up on the spectrum.
These are two alike goals, we are not the enemy. We just differ in how we ended up being exposed to the spectrum. We can all agree that it is essential for children and adults with autism be able to go to the store, a restaurant and fly on an airplane, etc without having to be discriminated against. Just as it is important that their medical needs be addressed and treated without discrimination.
Posted by: Allison | January 16, 2009 at 02:05 PM
Thank you, Jake! You ROCK! Your mother has a LOT to be proud of and so do you. Thanks again for sharing. I wish you all the best and look forward to reading more about what you experience as you begin to share this with others in your life. Many blessings.
Posted by: dgdavis | January 16, 2009 at 11:07 AM
Thank you for sharing your outstanding article Mr. Crosby.
I have twin boys born July 2003. After what we've witnessed and are dealing with now, (one twin dx'd ASD Aug 2007) I know now that they give TOO MUCH TOO SOON. And that VACCINES are NOT one size fits all.
I seriously DOUBT that by the time our twins hit High school, they will figure out the absolute reason why the rise in Autism. It's really not in their interest when it's really more for profit and at our expense.
Posted by: CamJam | January 15, 2009 at 07:25 PM
"Treating biomedical problems in our children does not mean that we don't love them with every ounce of our being" I am more than aware of that and most autistic parents deserve medals... I am just putting my point of view across in the hope we can all reach a middel ground, what ever the long term answers none of us really know, there is no real fact, I can only tell my experiance and I know my story iis just one of many..
I apologist to any that I seem to of offended and was not intended as such, but I have felt attacked by some just for being my usual aspies self, one thing we are often too honest for our own good.
I am well aware that many suffer gut and immune issues and dietary interventions work for many, I am not the expert on this but feel Donna Williams who could of been given up on is and her book, some info on her web site about anxiety exposure a very interesting read, anxiety as we all know causes many things... for people on or off the autism spectrum, but for those of us at odds with the world our exposure is much higher...
I am quite happy with my life, but I am so aware of the many children who cannot speak out and would wish no one to suffer as I have or others continue to, the mothers hear I know care as most mothers do. Unfortunately the lack of real understanding does not help anyone... I believe like many on the autistic spectrum we are often unintentionally disabled more by society than by their autism. And that unfortunatelly many associated, co morbid conditions are perceived as being autism when not.
I do know that people believe there are a number of physiological and biochemical correlates which may also be of relevance to the syndrome, but as with many things no fact... this research I feel is helpful as could benefit all man kind, but I do not feel directly relevant to just autism. I respect what you are trying to do and what lengths you are going to to help your children, I am also a parent of a child on the spectrum myself, I have a neighbor who has a child who developed really late, never spoke... starting too, she has embraced this child's unique difference and I have seen the transformation myself. I feel key is good speech theorist very few about, she was not so lucky in that regards, also if they do not get help at the right point often the window of opportunity is missed, we shut down, close off....
Posted by: Alyson Bradley | January 15, 2009 at 05:36 PM
Wow, there have been a tremendous amount of comments here since I looked yesterday. I would like to again express my thanks to you Jake as obviously you have sparked a conversation that needs to take place.
Treating biomedical problems in our children does not mean that we don't love them with every ounce of our being, in fact it's just the opposite. I live, breath and sleep thinking about my children and what their needs are. Many of us have children whose immune systems are constantly attacked by their environment. We just want to treat those issues so that our children can begin to have a mode of communication so that they may utilize their own knowledge and be able to one day live independantly, maybe have a family. Right now my son is no where near being able to do this so his autism is not in anyway related to those who are expressing their distaste for us on this comment board. My son deserves me to look at him and his needs not what others needs were or are. Autism is not the same across the board, everyone is an individual and should be looked at as individuals.
Craig, B-12 shots, including MB-12 shots have been used for decades even in mainstream med for treatment. Have you tried to bring some of the study information on MB-12 to your pediatrician? On Dr. Neubrander's sight you can get info on compounding pharmacies, dosing, etc. My pediatrician isn't biomed friendly however this is something I believe he would prescribe for my son if I wasn't seeing a DAN. Good luck!
Posted by: Allison | January 15, 2009 at 01:43 PM
Alyson said:
"Don't you dare tell me I do not understand how bad it is, I had to survive the ignorance of others, years of it and then I escaped and started to be a person in my own right. I know many who have not survived would rather die than live a life that others refuse to understand or listen too."
Hi Alyson. You say you escaped. But it seems to me from your writings that mentally you have not escaped at all. You are still trapped in that child who was (in your mind) wronged that many years ago. I am sure that had you been treated for your ailment, whichever way that might have been (there are a bunch of alternative treatments out there that treat a person holistically - mind, emotions, body - as opposed to the pathogen oriented mainstream medicine paradigm referred to as "sham treatments" by the Offits of this world) you would be in a much better place today.
Finally, this much is clear. Leaving things alone and pretending at acceptance, by the individual and possibly the others around that individual, is evidently not enough. Definitely not for a lifetime. I am glad we are on this journey, however hard it seems to be at the moment. Hopefully one day my son might thank me for it. Whether or not there will be regrets, remains to be seen ;).
Posted by: For Alyson | January 15, 2009 at 01:31 PM
Thank you Jake. And thank you to your couragoeus mother for helping making you the best you can be.
Posted by: Maggie | January 15, 2009 at 12:32 PM
Alyson said:
Don't you dare tell me I do not understand how bad it is, I had to survive the ignorance of others, years of it and then I escaped and started to be a person in my own right. I know many who have not survived would rather die than live a life that others refuse to understand or listen too.
***********************
Wow, Alyson, that's quite a strong statement for someone who is telling me that I should just leave my child the way he is, trapped in his own mind and not being able to voice his basic needs. Don't "I" DARE tell you???? Alyson, I'm going to make a statement to you only because it needs to be said and after that I will stop acknowledging your presence on this board.
****MIND YOUR OWN BUSINESS*******
Take your business elsewhere because AoA is not the place for you. Whether you follow Maureen's advice and just go away or stick around and stir up your brand of ignorance is completely up to you but at the very least be "lady like" and take your leave.
Posted by: rileysmom | January 15, 2009 at 12:06 PM
Thank u Jake for the very informative article, I do worry about my son, who is PDD-NOS and how he will function after high school.
Posted by: Cactusmom | January 15, 2009 at 12:05 PM
Thank you Jake for a wonderful article. My son is 18 and recovered from high functioning autism/aspergers. When I first started treatment for him (psychiatric) he voiced that he thought I was "trying to change who he was." Not so. I told him that what I was doing would not change who he was, that I was merely trying to repair the injury that was done to him by a vaccination error when he was 8 months old. After five years of biomedical treatment he is off the four psychiatric drugs he used to be on. He is now a normal teenager and it is wonderful to be able to relate to him like I did with his older neurotypical brothers. He understands that all I did was rescue him from the grip of autism which was actually preventing him from being the fantastic person is is now. I could no more have left him in his autism than I could leave diabetes or cancer untreated. Best of luck to you Jake!
Posted by: Lila White | January 15, 2009 at 11:26 AM
Thank you Mr. Crosby! I appreciate hearng your perspective. Brilliant! Can you please tell me what the B12 injection does for you and how you feel if you don't get it? Keep up the good work, you are a superstar and a terrific source of encouragement for all the parents working so hard to help our kids.
Posted by: Kim Bastible | January 15, 2009 at 10:12 AM
Alyson,
I appreciate your post even though it does come across harsh to parents who are trying to help their kids physically get well. There's definitely a difference between you, my son and the poor children who can't speak and are banging their heads against the wall. We cannot dismiss chronic diarrea and a need to sleep 4 hours in the afternoon as autism acceptance. My son was physically sick before biomed and now he's HFA. I appreciate your post because as he gets older, I need to add into the mix of vitamins/chelation/whatever else I decide to try a strong emphasis that he is different and that's OK.
There is nothing any of us should accept about physical problems that come along with an autism diagnosis. As parents, it's our job to make sure our children are healthy. We wouldn't tell a parent with a child diagnosed with a seizure disorder, just embrace it, accept your child for who they are and not help them right? I do hope you would agree.
Trust me, I wouldn't change my son's brain for all the tea in China. He's amazing and bright. He was one of the luckier one's in this vaccine tragedy ... vaccines injured his physical body more than his brain. I wish I could say that for all our children.
Posted by: Kathy | January 15, 2009 at 09:00 AM
Alyson said:
rileysmom I totally agree with you some cannot speak for themselves.. I couldn't for years myself, but does not mean the people who cared for me knew better!
Alyson,
We are parents. It is our job to make decisions for our children. I make decisions for my kids, and don't worry about if they are going to "like" them or not. My children are children first. One neuro-typical the other not.
Please, respect the fact that as parents- our first and foremost repsonsibility to our kids is to make decisions for them. If they grow up and tell me they didn't like something- oh well.... Tough nuggies- I was doing my job. And, I can confidently say as my children's caregiver...I do know what is best for them.
Don't attempt to undermind the role of parents- no matter how tough you had it.
Posted by: It's a parent's job | January 15, 2009 at 08:45 AM
Dear Jake,
Thank you for talking about this. My son also takes many vitamins and B12 shots. He is 10 (ADHD and Asperger's)and asks "why" a lot. I have told him a little bit, but, like your mother, do not want him to obsess about it at this time. Maybe I should explain more. He knows it helps his asthma and digestion immensely. I have always worried that he will not continue once he is grown and out of the house and how it will affect his health and behavior then. You are right that truth is always good. Keep writing. You give us parents of younger children great hope for them!
Posted by: Laura Cox | January 15, 2009 at 08:07 AM
Alyson go away this is not the forum for you!
Posted by: Maureen | January 15, 2009 at 07:41 AM
Alyson, it says on your site that you weren’t diagnosed until your late forties. I cannot possibly know what your parents did or didn’t do during your childhood (and I didn’t read past the point of finding out your age of diagnosis) but it seems that you are carrying over some of your anger/hurt/disappointment concerning your childhood and taking it out on parents here. If you didn’t know of your autism until you were almost fifty, what could your parents have been expected to know almost five decades ago? Who did they have to go to for education and support?
Just because you have been diagnosed as having autism, it does not automatically make you spokesperson for all things autism. And really, since you weren’t diagnosed until almost fifty, you didn’t even grow up as a child with an autism label. If people didn’t know that you had autism, then they were responding to you/your behaviours as something else. And hey, that’s not to dismiss anything you have to say or your right to say it. But as a parent, I not you, am my son’s spokesperson for now, like it or not.
Posted by: samaxtics | January 15, 2009 at 01:27 AM
Firstly, thank you Jake for sharing your story. I wish you all the best in your search for good health.
Secondly, I would like to speak to Alyson and AS Man. You are both very clearly high functioning individuals who embrace your autsim or Asperger's as being part of who you are - part of what makes you, you. I understand and appreciate that. We all face different challenges in life, if I may call them that, and they certainly shape us into the people we are today. However, please keep in mind that ASD is a spectrum. There are many who cannot speak their mind as you do. There are many who suffer with terrible gastrointestinal issues and deal with pain daily.
I truely wish my children were just neurologically different minded - if that were the case, I would be thrilled! Seriously, thrilled. But they're not. Instead, my daughter used to suffer such severe gut pain that she would wake every hour or two in the night screaming and crying in pain. There were times that she hurt so bad that she wouldn't let us touch her or comfort her in any way. She began bashing her head into the floor and cupboards to divert herself away from the pain in her belly that she constantly felt. I have video I could share with you if you like - it's not pretty. And I do not embrace it. I will not embrace it. I would be a BAD PARENT if I said it was just a part of her autism - sure it's tough now, but when she grows up she will just embrace her differences. Do you think that is what I should have done?
Now that she is being treated by a wonderful DAN! and a fabulous pediatric gastroenterologist specializing in ASD children, she is finally a happier, healthier child! She actually sleeps through the night, no longer postures to alleviate the pain, and her head banging days are gone. If it is quackery that I am doing, then by GOD I will keep up with the quackery. Thank you quackery for helping my daughter not be in pain and allowing her to enjoy life!
Posted by: Sheri | January 15, 2009 at 12:05 AM
rileysmom I totally agree with you some cannot speak for themselves.. I couldn't for years myself, but does not mean the people who cared for me knew better! Mostly caused me hurt and pain, lets just say a misunderstood difference - I understand why you want to find answer even put blame, but all I am trying to do is let you know as a person on the autism spectrum, as a child I would of so much more preferred others to truly try and listen to me, much of my own frustration was because this did not happen, my own parents like many were to busy trying to find an answer refusing to except me for the person I was born to be, this is what caused me the most damage like many others, I am just trying to be the voice many do not have....
Don't you dare tell me I do not understand how bad it is, I had to survive the ignorance of others, years of it and then I escaped and started to be a person in my own right. I know many who have not survived would rather die than live a life that others refuse to understand or listen too.
I am happy to listen to your views and may not agree, but feel its wrong for you to feel a need to put me down, how many adults on the autism spectrum have you spoken too, do you truly feel none autism people know better than those of us on the spectrum, ones that have suffered and survived, I only get my information from real life or the best facts available, where does your information come from... I am happy to agree to differ, but not happy that you feel a need to judge such a misunderstood difference....
If you really want to know read the complete works of as by Tony Attwood, read every post on my site Aspergers Parallel Planet and others and then you may have an insight, but you can not know unless you have lived my life, the same as I have not believed yours or feel I can tell you how to live...
Posted by: Alyson Bradley | January 14, 2009 at 11:33 PM
Jake,
I really appreciate your sharing this perspective.
I may be considered by some to be on the spectrum. Some might label me pathologically shy or hyper-sensitive.
When my daughter showed signs of developmental delay (or differences), I wanted to avoid like the plague any behavioral therapy that might have her spend hours trying to “normalize” her “weaker” skills, at the same time, after years of two-steps-forward-one-step-backwards, and even worse, one-step-forward-and-two-steps-backward without any development (except what she has worked very hard for) I had to acknowledge that something physiological was undoing her efforts to learn (and beginning to make her visibly sick), and I had to acknowledge that most of her major regression were on the heels of exposures to these environmental toxins (mostly vaccine & dental) that I heedlessly let her receive.
I guess I’ve developed at this point a sort of combined “respect both neuro-diversity & bio-diversity” perspective which I think is what most here try to do.
If a person cannot handle an exposure the average person supposedly can without suffering or loss of abilities (or if a person already has had more exposure than the average person) then that “diversity” should also be respected by “healthcare” authorities and the rest of us, shouldn’t it?
At least that’s where I feel like more consideration needs to be given in our healthcare and environmental decisions.
I hope you’ll keep writing for AoA.
Posted by: JenB | January 14, 2009 at 10:11 PM
way to go Jake. As the parent of a 6yr old, it's great to hear your perspective. Autism means so many different things to different people and there is tremendous diversity in both the cause and expression that needs to be exposed. At this point its possible that everyone is right to some extent. Most of all, in the middle of all this technical talk about autism, its important to hear the voices that can speak for themselves through the autism, especially those are both self respecting, confident and hopeful.
Posted by: jruch | January 14, 2009 at 10:04 PM
Alyson Bradley wrote:
First I would like to say those of us on the autism spectrum can speak for ourselves... as in a few of the comments it was implied otherwise
********************
No Alyson, some can't speak for themselves. My son is the full blown ASD with a capital A and what he can do is grunt, growl and scream. We work on speech everyday and still haven't made much progress. So for you to say that people with ASD can speak for themselves is very condesnding of you. You go ahead and keep speaking for yourself. But don't think it's safe to assume that I want YOU speaking for my son for the rest of his life. He deserves much better than that and I intend to make sure I've given him the fighting chance he deserves MY WAY. Whether that's bio med treatment or chelation or painting him purple, because it's my choice, not yours.
I personally have never had anything against the ND crowd. I've always listened to the people that have written me and taken into consideration their feelings and their concerns about not being seen as people but just a disorder. The problem is my son will ALWAYS be seen as a disorder because you feel I shouldn't treat him? Afford me and my son the same respect that you and the ND crowd are demanding. And yes, I do mean DEMANDING because at the very least YOU can type your demands. At this point my son can grunt his demands and who are you to tell him he just except this? Yea, next time he starts growling at me, I'll tell him to embrace the growl...be the growl Riley.
Posted by: rileysmom | January 14, 2009 at 07:32 PM
Alyson, I just lost some comments while moderating - some funky glitch. I'm sorry. I didn't moderate you out.
I will point out that we are a site devoted to the biomedical treatment of people with autism in order give them every opportunity life provides. Because we love them. And we respect them. Most of us are parents. And our children have been profoundly injured.
You've been a doll in your comments, and we're happy to listen to you and to tell you why we disagree. I'm the mother of three girls with autism, and I would dearly love them to have your skills.
But keep in mind, you'd probably never go into a site where parents of children killed by drunk drivers were sharing ideas and try to tell them that most drunk drivers are really good people and mean no harm and that people against drunk drivers are looney birds. That's how your comments feel to me.
Best,
KIM
Posted by: Stagmom for ALyson | January 14, 2009 at 07:19 PM
Clarifying:
The lab test ordered by our mainstream pediatric doc to check for heavy metal toxicity is UPPA - urine porphyrin profile analysis.
Posted by: biomedmom | January 14, 2009 at 07:18 PM
Alyson, your story is heartbreaking and is another reason why we are all trying so hard to remove toxins from vaccines and reduce the number of vaccines that are "recommended" for pregnant women, babies, and children. Mercury does also cause genetic mutations.
Posted by: biomedmom | January 14, 2009 at 07:11 PM
Craig, unfortunately, MB12 shots, you know, vitamins, are not readily available through online ordering and fake docs like, say, Viagra and Levitra. After all, got to protect the public!!!
You do need a scrip for them.
KIM
Posted by: Stagmom | January 14, 2009 at 06:56 PM
Hey everyone, slightly off topic here.
We don't really have any DAN doctors in our area, and we can't really afford one if there was (unfortunately). Is there a way to get the Methyl B12 shots without a DAN doctor and would someone be so nice as to point me in the right direction? Is there a pharmacy that you use, or do you order it from Canada or what? My son did pretty good with the GFCF diet, and he did even better with CLO. We have tried the B12 drops, and my son responds pretty good to them, but I think he would do so much better with the injections. Any information would be greatly greatly appreciated.
Posted by: Craig Willoughby | January 14, 2009 at 06:26 PM
Leila, one of our mainstream pediatric docs ordered the test for heavy metal toxicity. We've never had a DAN! doc. The lab we used was Lab Corp. The test was unprovoked and indicated a mercury level 10 times what it should have been. Prior to this, our child never had any form of detox, chelation or otherwise. A test following several weeks of chelation (provoked?) indicated a reduction in mercury levels, as have all of the subsequent tests.
Posted by: biomedmom | January 14, 2009 at 06:07 PM
I would just like to add I truly feel its about time none autism people listen to those of us ion the autism spectrum, many of us do have a very high intelligent even if we communicate different, our voice needs to be heard... myself I know there is no answers, facts for autism just like the universe and I only research the best like Cambridge University UK not scare manger articles.... and until there is maybe we all should accept each others di9fferences, at least try and understand and respect that many of us those that can speak out are quite happy once we grow up and understand ourselves, yes as a child having to fight against a parent who never understood, a young adult who was never allowed to be maybe back then I wanted to be like you because was not accepted for me. Since finding autism I have found self and true identity, even being ion the autism spectrum myself it took me a few years to understand fully, but you have to want to known and embrace our differences, which I feel is the key to unlocking so many lost children, maybe they can not speak on your terms but knowing what thats like as an adult I will continue to do my best to speak for them, help others see through there eyes, get down on your child's level and truly understand is the only way you will truly connect, and help make a huge different in your childs life...
Posted by: Alyson Bradley | January 14, 2009 at 05:23 PM
biomedmom First I may now be able to function well to others, when the world allows... I was none communicative when younger, did eventually have some speak lessons which helped and still at times not always understood.
While I am in agreement that Thimerosal toxics are not good, for anyone I do not feel its the cause of my neurological different as with many of my aspie / autie friends... many when younger and still do communicate differently and the only people who seem to have a problem with this are the ones that try and change, make us conform rather than embrace and understand us...
I have accepted who I am, and at times find it difficult I guess that others continue to want to change or find a reason for my existence... I exist, many of us are rejected even by our parents.. my own mother never understood me and we never connected, but we all grow up into adult, of course we learn to change and adapt and to fit into a stereo type "norn" to keep who happy I often ask myself, but my autism heart will always be the very core of me...
Yes we have many weaknesses, but also many strengths just like those not on the autism spectrum and we are as diverse and different from one another as you...
Posted by: Alyson Bradley | January 14, 2009 at 05:13 PM
Thank you, Jake, for sharing your story with everyone! It is sad that people fail to listen to the people who are actually living with Autism sometimes. Much wished success with your schooling!
Posted by: Gabriel's Momma | January 14, 2009 at 04:56 PM
Alyson-
I respect your opinion on how YOU developed autism. However, I don't think it's fair to say that just because you didn't "get" autism from vaccines, that no one else did. Go ahead and explain to the thousands of parents who personally WATCHED our babies slip away from us after receiving vaccines. MY son was completely neuro-typical up to his MMR 4 days after his first birthday. He hit every milestone on time and even early with a few. I even have pictures of him at his birthday party where you can see a happy, smiling, thriving one-year old.....four days later my little boy that I knew was gone. I would love to hear your "experts" you have sited numerous times explain that. Almost every study that was done on vaccines and autism has been backed by a pharma company. Why would they want to prove that vaccines weren't safe? They would lose BILLIONS of dollars if they did. It's smart that they use scare tactics like they do on parents....it gets them what they want. MONEY. Do you really think that it's a good idea to put formaldehyde or aborted fetal tissue in your body? Look up every ingredient that is put in to those vaccines people call "safe" and then really tell me that you don't see how it could possibly be linked. You can find a list of all of the ingredients on the CDC website.
Posted by: Gabriel's Momma | January 14, 2009 at 04:53 PM
Alyson, perhaps you can take a moment to Google MSDS (material safety data sheet) Thimerosal and read for yourself about the toxic nature of it. And remember that it is injected into babies and pregnant women.
0.5 parts per billion (ppb) mercury = Kills human neuroblastoma cells (Parran et al., Toxicol Sci 2005; 86: 132-140).
2 ppb mercury = U.S. EPA limit for drinking water http://www.epa.gov/safewater/contaminants/index.html#mcls
20 ppb mercury = Neurite membrane structure destroyed (Leong et al., Neuroreport 2001; 12: 733-37).
200 ppb mercury = level in liquid the EPA classifies as hazardous waste. http://www.epa.gov/epaoswer/hazwaste/mercury/regs.htm#hazwaste
25,000 ppb mercury = Concentration of mercury in the Hepatitis B vaccine, administered at birth in the U.S., from 1990-2001.
50,000 ppb Mercury = Concentration of mercury in multi-dose DTaP and Haemophilus B vaccine vials, administered 4 times each in the 1990's to children at 2, 4, 6, 12 and 18 months of age. Current "preservative" level mercury in multi-dose flu (94% of supply), meningococcal and tetanus (7 and older) vaccines. This can be confirmed by simply analyzing the multi- dose vials.
THIMEROSAL Hazard symbol: T+ = Very toxic
Criteria: Inhalation, swallowing, or absorption through the skin in very small amounts can cause considerable damage to health, and may sometimes be lethal. In the event of serious evidence of severe, possibly irreversible damage to health by single, repeated, or prolonged absorption. Precaution: All contact with the human body must be avoided. If you feel unwell, seek medical advice immediately!
Symptoms of exposure to this class of compounds includes aphthous stomatitis, catarrhal gingivitis, nausea, liquid stools, pain, liver dis- order, injury to the cardiovascular system and hematopoietic system, deafness and ataxia. Exposure may be fatal. Headache, paresthesia of the tongue, lips, fingers and toes, other non-specific dysfunctions, metallic taste, slight gastrointestinal disturbances, excessive flatus and diarrhea may occur. Acute poisoning may cause gastrointestinal irritation and renal failure. Early signs of severe poisoning include fine tremors of extended hands, loss of side vision, slight loss of coordination in the eyes, speech, writing and gait, inability to stand or carry out voluntary movements, occasional muscle atrophy and flexure contractures, generalized myoclonic movements, difficulty under- standing ordinary speech, irritability and bad temper progressing to mania, stupor, coma, mental retardation in children, skin irritation, blisters and dermatitis [173]. Other symptoms include chorea, athetosis, tremors, convul- sions, pain and numbness in the extremities, nephritis, salivation, loosening of the teeth, blue line on the gums, anxiety, mental depression, insomnia, hallucinations and central nervous system effects [301]. Exposure may also cause irritation of the eyes, mucous membranes and upper respiratory tract [269].
---
The State of California allowed Thimerosal laden flu shots to be given to pregnant women, children, and everyone else in 2006 because of a "crisis" of a shortage of Thimerosal free flu shots. Given that toxicologists have stated in vaccine court that the symptoms of autism can show up 5-6 years after injection of mercury, I don't put a lot of stock in the theory. Thimerosal laden vaccines were not recalled at the time of the CA legislation banning it in vaccines for pregnant women and children. Physicians used the Thimerosal laden vaccines until their expiration dates. One should also consider that the state of CA is growing at the rate of a country, not a state.
Because the flu shot and the tetanus booster still contain the full dose amounts of Thimerosal, reducing the amount of it in other vaccines has been the equivalent of putting a bandaid on a gaping wound. Actually worse, because the public has been mislead to think that real progress has been made in the reduction of Thimerosal in vaccines. Not so at all when you look at recent recommendations re: flu shouts and pregnant women. And as I posted earlier, of the three companies that manufacture flu shots for children, only one of them manufactures and Thimerosal free version.
http://www.dhs.ca.gov/pcfh/cms/chdp/pdf/chdpin06Cattach.pdf
http://www.chhs.ca.gov/News/Documents/Thimerosal%20Exemption%20Belshe%20Statement%2011-2-06.pdf
In closing I would like to say to you that it is fortunate you are obviously able to function well. It is, however, unfortunate that you do not even consider all the children and young adults who are also on the spectrum who can barely function at all.
Posted by: biomedmom | January 14, 2009 at 04:32 PM
BiomedMom, the problem is, the credibility of the labs that work with provoked urine samples and compare the levels with non-provoked averages has been put into question. It's comparing apples and oranges; the levels on the provoked samples will always be higher than average, even in healthy people.
Most likely, if a regular (non-DAN) lab runs a urine test for your child with no prior chelation there will be nothing abnormal on the results.
"Alternative" doctors and labs are constantly making those claims and not only autism families are being deceived - most recently we saw the case of actor Jeremy Piven who was told by his doctor that he had been mercury toxic "off the charts" for eating too much fish. We definitely have to take those lab results with more than a grain of salt. If I were you, I'd show those lab results to your son's mainstream pediatrician and see if he'd agree to test him for heavy metals at a mainstream lab. Then you can compare the results.
Posted by: Leila | January 14, 2009 at 04:27 PM
Leila, unless a patient is laboratory proven heavy metal toxic, a physician will not prescribe chelation for him/her.
Our child had mercury levels 10 times what they should have been. The ONLY source of mercury for our child was the 200 mcg of ethyl mercury received in Thimerosal laden vaccines in the early 1990's. Like tens of thousands of other parents, we knew what happened to our child when play and language abruptly ended. We knew it was the mercury in vaccines but we had to have lab tests prove it, to get the appropriate medications.
http://www.vaccinationnews.com/DailyNews/July2001/AutismUniqueMercPoison.htm
Posted by: biomedmom | January 14, 2009 at 04:11 PM
First I would like to say those of us on the autism spectrum can speak for ourselves... as in a few of the comments it was implied otherwise, autism has been in my family for generations and not all have had vaccines... I truly do not feel this is the cause and the answer I feel is acceptance, understanding and allowing our differences... conformity is usually not for the person on the autism spectrum but to make the none autistic persons life easier, all minorities are forced to conform to a point until understand - AWARENESS worldwide is what is needed...
Anyway as about vaccines etc.. will give you my point of view: Being on the Autism Spectrum myself I do not and have never suffered, just differently minded. So personally I feel there is NO link to autism and vaccines I was born different... I am not a expert in the vaccine field, but feel we all have to make our own minds up and the best way to do that is listen to the real experts, top research centers and up to date info.
My gut feeling even before reading all the best research information would still be NO. I do not take any think lightly, as very rarely even take any form of medication or drugs... but I do believe these vaccines save many lives.. scare mongering kills!
Just some expert opinions:
The MMR Vaccine and Autism -Tim Worstall
This rather surprised me in the papers this morning.
The measles, mumps and rubella vaccine is safe and does not cause autism, the most comprehensive study carried out on the jab has concluded.
Is there anybody out there who seriously thinks it does?
No, that's being unkind I think, my position is clearly influenced by the fact that I actually know something about the background. (Disclosure, I'm paid to write about Simon Baron Cohen's theories elsewhere and given that he's the head of the Autism Research Centre at Cambridge, obviously some of the knowledge has sunk in.)
The observed rise in autism incidence from the early 1980s onwards has been down to two things.
1) The diagnosis was changed then from being purely what we might call "classic autism" to the autism spectrum, including conditions like Asperger's Syndrome. Change the diagnosis and you'll change the incidence, obviously.
2) If Baron Cohen is correct (and he does seem to be) there's been a rise in assortative mating. This leads to more children with the extreme systemizing brain type which is the definition of autism.
No, it hasn't been the use of mercury in vaccines, which is the current US woo woo scare. (When Japan removed such mercury from childhood vaccins the autism rate continued to climb just the same as everywhere else.) Nor is it the MMR vaccine, which has been the woo woo scare here.
So can we get back to people vaccinating their children please? We really don't want to return to visions of children dying, being brain damaged, by measles, do we? Or children being born deaf, dumb and blind as a result of their mothers getting rubella while pregnant? Nor, if I might mention something closer to home*, a return to 1% of adult male mumps sufferers becoming infertile?
The Centers for Disease Control says "There is no convincing scientific evidence of harm caused by the low doses of thimerosal in vaccines, except for minor reactions like redness and swelling at the injection site."
The American Academy of Pediatrics says"No scientific data link thimerosal used as a preservative in vaccines with any pediatric neurologic disorder, including autism."
The Food and Drug Administration conducted a review in 1999 -- the year thimerosal was ordered to be removed from most vaccines -- and said that it "found no evidence of harm from the use of thimerosal as a vaccine preservative, other than local hypersensitivity reactions."
The Institute of Medicine’s Immunization Safety Review Committee concluded "that the body of epidemiological evidence favors rejection of a causal relationship between thimerosal-containing vaccines and autism."
And a study of California Department of Developmental Services data published last month indicated that there was "an increase in autism in California despite the removal of thimerosal from most vaccines."
MMR vaccine 'does not cause autism' - Telegraph
http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2008/03/18/nmmr118.xml
How Safe Are Vaccines? 21 May 2008 by Alice Park - Time
Interesting article, I guess until there are clear guild lines we will all have to make up our own minds:http://www.time.com/time/health/article0,8599,1808438,00.html
Nearly all experts say NO - you decide.
But fad treatments, alternative treatments is big business - money to be made. Maybe I will start my own fad treatments and charge (water and exercise) work better than most fad treatments!
The great autism rip-off
http://www.dailymail.co.uk/health/article-1023351/The-great-autism-rip---
How-huge-industry-feeds-parents-desperate-cure-children.html
Everyone on or off the autism spectrum benefits from vitamins and omega fatty acids, we can all improve our diets and some of us have gut problems etc... not all of us, just like some people I know not on the autism spectrum... but my autism core my AUTISM HEART is the very being of who I am, surrounding that is many associated, co-morbid conditions not always directly associated with autism itself...
I have aspergers, my older son is on the autism spectrum, before I understand myself or autism I had problems now I am no longer ignorant and so have no problems with who I am my son and our relationship... if you truly want ti understand listen to those who have lived with and around autism all there life, as we truly are just neurological differently minded.
Aspergers Parallel Planet
Posted by: Alyson Bradley | January 14, 2009 at 03:51 PM
Dear Mr. Crosby:
I would like to extend my thanks to you and Age of Autism for publishing this wonderful piece. I have been curious about what my 6 year old thinks regarding all of the vitamins and supplements that he receives and all of the therapies he attends each week. I never thought it would make him feel different because it has been his "normal" for so long and he doesn't know life any other way.
I would like to thank you for sharing your thoughts on improving your health, since I truly believe my son knows that is exactly what we are aiming to do, as I am for myself.
I echo Mr. Krakow's sentiments that you are to be praised and given great respect for speaking the truth. You have given me great hope that I will be able to empower my own son, who was also similarly affected by injury caused by toxic exposure, to accept his identity and not shun it.
Well done.
Jennifer Keefe
Parent
Posted by: Jennifer Keefe | January 14, 2009 at 03:11 PM
"Journalistically" speaking, kudos do Age of Autism for finding an ASD young man who subscribes to the mercury poisoning theory in contrast with the more well-known autistic bloggers on the web. However, I think Jake was too quick to jump to the conclusion that thimerosal and vaccines caused his disability. The jury is still out on what environmental agents, if any, contribute to cause autism spectrum disorders. Understanding the cause of autism is not a matter of faith or gut feeling or belief in logical hypothesis, but rather the result of extensive and serious scientific research. There is absolutely no consensus in the scientific community yet. Jake, you don't have to believe you're "toxic". Maybe you are, maybe you're not.
Posted by: Leila | January 14, 2009 at 02:22 PM
Thanks Jake and his wonderful family for this story. It is inspiring and wonderful. Please keep writing and keep your new friends updated.
To folks who don't want to be like Jake and perhaps have ASD / health issues/ or challenges; I wish you all the best. Your choices are your choices. These are the same to choices available to Jake and his family. This is why I live in the United States.
Respectfully - mother to Jeff
(My goal for him is that he needs no ones help when I am dead and gone. Hey - isn't that every parents #1 job? Everything about Jeff - including for me to get pregnant - was about choice.)
Posted by: Lisa | January 14, 2009 at 02:17 PM
thanks for your open-ness about your journey, Jake. I have struggled with anxiety for most of my adult life (I think it's more along the lines of social anxiety disorder or phobia) and the only thing I have found to really help (besides common sense things like good sleep, healthy diet (including enough vits and minerals (magesium etc.) is a low dose SSRI.The point is some people have been pretty judgemental about my choice to take this-like I should just "tough it out" or keep trying more natural stuff but honestly, if it didn't work so well, I would not be taking it. Somehow, in our family, we lost out on the serotonin department and I choose to do this rather than drink or suffer.
Would AS Man tell me that I should be true to myself and EMbrace my social anxiety?
I can't work effectively or advocate for me or anybody else if I did not use my medicine. I know it isn't easy to get off of because I have gone off it before. Life is good and everyone should do whatever it is they have to do (through trial and error,often) to feel the best they can.
Good luck to you. I know you have helped many people just by relating your story.
Posted by: jen | January 14, 2009 at 02:15 PM
Robin,
I just also want to add ... we are talking about a spectrum here. Some of us have verbal kids with very high functioning autism. I think those are the kids who may not like to chit chat ... mine doesn't - he'd rather figure out some mathematical equation or create a virtual world on paper - he's 9. I'm sure as an adult, he'll suck at small talk but he'll be amazing at something that doesn't require chit chatting. If the year was 1950, he'd be considered a nerd not autistic. BUT, again, he was toxic at 5 when diagnosed - his gastrointestinal problems were real. His leaky gut was real. His mitochondria disorder was real. Mainstream doctors dismissed his medical issues and told me to go read "Quirky Kids" That's wrong.
I pray the day comes that a mother can walk into a mainstream pediatrician's office and have her child treated appropriately and not be dismissed with "Oh, well they are autistic".
These kids have medical issues that need to be treated. Once I treated my son simply with dietary changes, he was potty trained. This was half way through kindergarten and he was being made fun of by his peers because he was still wearing a pull-up but yet reading chapter books. Go figure. I only have the parents before me to thank for helping me. Thank you ... and someday hopefully we can thank our pediatricians instead.
Posted by: Kathy | January 14, 2009 at 01:56 PM
I don't get it either.
A brain injury is a brain injury. Just like a heart defect is a heart defect.
Why is it that my neighbors, whose son has a heart defect, can give him medication and take him to a specialist to check his pacemaker and they are seen as good parents doing what they have to do to address their son's medical issues, but when I take my autistic daughter to a DAN! doctor and she takes vitamins and takes antifungals for a horrible yeast infection (that she had for years, and I knew it, and mainstream doctors refused to treat it), that means that I lack love and acceptance of my daughter? WHAT is up with that?
Why is it that my next door neighbor can say the words "I wish my son didn't have a heart defect" and no one would flinch, but I cannot say "I wish my daughter didn't have autism" without getting the "you're a bad mommy, you just don't love your daughter" treatment?
Why?
Thanks Jake, for writing.
Posted by: Chris | January 14, 2009 at 01:50 PM
One thing I think we should take from this piece is the importance of just continuing to get our information out there. Sometimes it may not seem like much, but people are hearing and they are filing information about recovery through biomedical intervention away for later use, just like Jake did when he heard that newscast.
People will hear us. And it may not mean anything to them now, but maybe they'll remember us when their nephew, etc. gets diagnosed. And lives will be made better, children healthier.
One brief newscast four years ago helped Jake. And even if he was the only one that heard it, it was still the best use of four mintues or so of air time I can think of.
Posted by: Jack | January 14, 2009 at 01:43 PM
Thank you Jake for this great article.
I run a support group for college students with Autism Spectrum Disorders at a large university and one of the group members uses biomedical interventions and the gf/cf diet with significant benefit.
Just like another poster here said, I myself take vitamins and omega fatty acids with significant benefit.
Thanks for letting people know!
Posted by: Rachel | January 14, 2009 at 01:39 PM
Dear Mr. Crosby:
Thank you for your testimony relating your difficult experiences with Asperger Syndrome. As a parent, I am grateful that you have so well articulated your experiences and your effort to improve your health. I hope that one day my son, who likely was injured in the same way as you, can explain his experiences in a fashion that approaches your beautifully written essay.
To "The AS Man" I would humbly suggest that he accord to Jake Crosby the same respect that he demands for all individuals with "autism." Contrary to "The AS Man"'s claims Jake Crosby has empowered himself by speaking the truth while affirming his identity. By so doing he has helped to empower all who have been similarly affected by injury caused by toxic exposure. That does not diminish Jake or change who he is; it does mean Jake has the courage to fight for his rightful place on this earth – a place in which all persons have a right to be free from unnecessary iatrogenic exposure to toxins and the rightful opportunity to improve their condition and quality of life. To say that in no way impairs or disempowers any individual.
Jake Crosby is a courageous young man.
Sincerely.
Robert J. Krakow, Esq.
Parent
Posted by: Robert J. Krakow | January 14, 2009 at 01:34 PM
Jake,
Thanks alot for your posting ... my son has HFA/AS. But on top of HFA/AS, he did have real medical issues that dietary changes, vitamins and chelation helped tremendously. He's currently on a mito cocktail and finally, first time in his life, has energy. He's 9. I'm feeling like he's *recovered* from his vaccine injury as much as possible.
He asked me the other day if his autism was going to go away after we watched the video "Normal People Scare Me". I was stumped. I just told him, you are who you are and you have great gifts - autism doesn't define you. Somethings are harder for you than others and somethings are really easy - you'll be just fine.
It's amazing how fast our children grow-up and are now so aware and asking why they have to take the vitamins etc. I consider myself one of the lucky one's, my son can ask the question. My son is amazing and I loved him just the way he was and they way he is. He's a gift. I hope to see more posts by you. It's important for parents to hear from young adults so we can help our own kids.
Posted by: Kathy | January 14, 2009 at 01:27 PM
Wow Jake- thanks for posting on Age of Autism. The news story that you saw- was it on FOX News or FOX5NY? AutismMedia.org has some of the clips that ran on FOX5NY a few years ago.
I hope you write more about your life on here. Thanks again!
Posted by: Christine Heeren | January 14, 2009 at 01:20 PM
You are certainly a very good writer and it's very interesting to hear your perspective about your childhood and current experiences.
Best wishes
Posted by: Maddy | January 14, 2009 at 12:48 PM
Amber, Andrea makes a good point. If someone saw an incompetent cardiologist for a heart problem, nobody would conclude that cardiologists should never be consulted. Within all professions, there are competent and incompetent, honest and unscrupulous people.
What makes it extra hard with biomedical is that the science is new and mainstream medicine is for the most part not paying attention, so there is still a lot of trial and error, and the choices of providers are limited. We desperately need more research on biomedical treatments.
Posted by: Twyla | January 14, 2009 at 12:29 PM
Fair enough Amber. But, please consider not all main-stream doctors have all the answers either. You said your son needed anti-biotics and not homeopathic treatments, chiropractic adjustments, and vitamins. Well, I can tell you my son had way too many anti-biotics in his short lifetime. He was actually taking 3 at once one time when he had a sinus infection that lasted over nine months! For him, getting on vitamins, taking probiotics, and beginning the gfcf diet began him on the road to recovery. The anti-biotics were not working for him. How long should we have subjected him to mainstream quackery? Those dangerous, ineffective medications they were giving him did nothing to help his persisting infection. Not to mention the long term effects of taking so many anti-biotics.
The overwhelming anecdotal evidence from the bio-med camp is most children respond to many of these treatments. A word to the wise would to get a couple personal referrals to a doctor before investing so much time and money. There are many qualified practioners out there. All are not perfect just as all mainstream docs aren't.
There are mainstream MD's who are quacks too.
But, we agree it is ultimately the parents who should decide how to handle their child's health with a doctor of their choosing.
I agree about Jake's tone in this post. If more adults autistics addressed parents in the manner Jake has, I bet more parents would be inclined to listen to what they have to say.
Posted by: Andrea | January 14, 2009 at 12:03 PM
AS Man, I am glad that you function at a level that allows you to make a choice for yourself to be proud of your autism.
Others with autism can't speak for themselves to express the pride you think they should feel, nor can they care for themselves, etc. Don't question whether we love and/or accept our kids, we do. But would you advise the parents of a cancer patient to just accept the fact that their child has genetic issues and not to bother to treat the cancer, but instead to have the child stand up as a proud cancerman?
I love my son, and if he wants to embrace his autism at some point and wear it as a badge of pride that will be his choice. But first I need to make sure he is in a place where he can make that choice and give voice to that choice.
If you choose, be proud of your asperger's, but acknowledge that not everyone is in a position to express their pride. Be your name, an AS Man, instead of an ASs Hole
Posted by: MadDad | January 14, 2009 at 12:03 PM
Jake -
Thank you so much for writing. I look forward to reading more articles by you! With very best wishes,
Twyla
Posted by: Twyla | January 14, 2009 at 11:59 AM
From Joy de Vries -
"Both my children have Aspergers and for me accepting them for who they are is not looking for ways to reverse 'the damage'. I don't think they are damaged, just different from me in many positive and beautiful ways."
I don't understand you. If your child had the flu, would you not treat it (and I don't mean give him a flu shot)? If your child had a fever, would you not treat it? If your child had seizures, would you not treat them? If your child had asthma, would you not treat it to help your child breathe better? If your child had chronic diarrhea (with the measles virus in his gut), would you not treat for the measles virus and the resulting inflammation so he can begin to absorb the nutrients from his food? If your child had oxidative stress and inflammation in his brain and CNS, would you not treat for it? Finally if your child had mercury in his brain and an Aspergers' diagnosis would you not chelate him so that he could become like you?
We all love our children, but we recognize the damage mercury poisoning does and we wish to treat it to enable our kids to live normal, healthy lives. Do you think your kids will forgive you for celebrating their "difference" and not doing anything about it when it becomes apparent that it was the mercury that gave them their Aspergers' to begin with? It is mercury poisoning, it just looks different in different people because of genetics. You may want to get with it and treat your kids' Aspergers' before the mercury sitting in their brains continues to corrode away at their health and brains as they age.
And finally there's this thing about seizures. You NEVER know when they might strike your child and catch you unawares. All of the "beautiful positives" that you have outlined and are celebrating right now, will tend to fly out the window pretty quick if that should happen. Another thing, seizure meds in the ASD population are mainly ineffective. Mostly, parents flit from one med to another whilst brain damage continues unabated. Not a pretty picture believe you me. If I were you I would hop onto that chelation bandwagon fairly quick and consider yourself lucky that you don't seem to have too much going on in the health breakdown department. When that happens, there is utmost dismay and despair going on, not so much the different and beautiful. But then, nobody really knows what the future holds, do we?
Posted by: For Joy de Vries | January 14, 2009 at 11:54 AM
Jake, thank you!!!
Please write more often, I really enjoyed this piece. It was so hopeful.
Posted by: karenatlanta | January 14, 2009 at 11:13 AM
Jake, thank you for writing about your life experiences. I hope that you are enjoying college and finding many people who appreciate your many talents. Your words are a helpful guide for younger children on the autism spectrum.
Other people who overfocus on their definition of "pride" or fuss about the word "damage" should realize that most humans today carry a body burden of various toxic substances. Removing those substances in order to feel better physically has little or nothing to do with peer solidarity and others' perception of that societal subculture.
FWIW, I don't want my son to lose the qualities that make him unique. In our home, "autism" is just another descriptor of condition such as fitness, fatness, young, old, plaid, whatever. I do want my son to live a healthy, active and pain-free life, but he's not treated like an experiment -- as some critics might imagine from far away.
A word of advice: Let unpleasantries roll off your back like water on a duck.
Posted by: nhokkanen | January 14, 2009 at 11:11 AM
Jake, I very much enjoyed reading your views on things. You managed to say it all without the often hateful, angry tone that so many biomed related articles seem to be filled with. While I disagree with your views on Thimerosal causing autism, I love the way you express yourself, and agree that family members DO and should have the right to decide on various treatment options, and know their own diagnosis (if they are competent to make those decision, my 5 year old would not be, obviously).
I can understand some of the commenter's sentiments about being bothered by their doctors being referred to as Quacks who sell them expensive vitamins that do nothing... However, for some of us, it was an experience that taught us this. When Jaymes was 1, I took him to a chiropractor/nutritionist who was very much a quack. She took hundreds of dollars from me, for vitamins that made Jaymes sick and never improved anything but her account balance. She did chiropractic adjustments that left him sore and unhappy. She gave us garlic drops to cure his ear infections (he needed antibiotics, he gets such severe infections that they ooze pus and blood, even with tubes.) I was a new mom, and I wanted it all to work out, so I paid the money (I had credit cards at the time! Hooray.. or not!) and I gave it a fair year of work... And nothing. I'm happy for those of you who have had luck with vitamins and supplements, and have biomed docs who are not quacks, but please remember that not all children find improvement with these things, and not all the biomed docs are on the up and up.
Posted by: Amber DBTD | January 14, 2009 at 10:53 AM
Jake, thanks for sharing this with the world and having the guts to stand up to the abuse from the ND crowd, as evidenced by some of the comments. I wish you all the best in the future and I hope chelation can help you further improve.
Posted by: Harry Hofherr | January 14, 2009 at 09:54 AM
Wow Jake, thank you! Beautifully written, open, and courageous. You inspire me.
Those ramdon few that have seemed to attack you in these comments are expressing how they feel about themselves not you. My son was not born this way, it must be difficult for those who have claimed an ND status to understand that. Your truth is your truth, it is the same as my son's, and your bravery in sharing it with everyone is more than admirable.
Posted by: Allison | January 14, 2009 at 09:51 AM
Jake, you and your mom are awesome! God Bless You.
Posted by: biomedmom | January 14, 2009 at 09:50 AM
Hi Jake. It’s really good to hear from you.
I grew up speaking to almost no one. It wasn’t that I couldn’t speak, it’s just that I never knew what to say to people. Someone on the internet referred to it as ‘topic finding disorder’. Which is a pretty accurate description, but I still think ‘vaccine damage’ is the best name for this.
I knew when I was eleven and first heard the word ‘autism’ that I had something related. But I was mainstreamed in school, got an engineering degree and a professional engineering license, met a man in college (I told him when we were dating “I think I have something sort of like autism”, but he said “oh no you’re just quiet!”), worked for six years in the engineering field, and then proceeded to have children. My first was evaluated at around age four for ASD. She was never diagnosed. I remember the Pshrink saying “well she’s just odd”. Although her teacher at the preschool described it as “I think she needs help that we are not prepared to give her.”
She is nineteen now, btw, and doing well, I think.
My youngest boy, also undiagnosed, was referred to by a teacher when he was around age eight or ten as possibly having ‘selective mutism’.
Whatever.
I did a lot of research when my oldest was four. I’ll never forget the horror of wondering what I might be dealing with. It’s hard to know what to expect of a toddler. And I never had much experience with children, so when the word ‘autism’ was first said to me, I was horrified. It was said, btw, by my daughter’s gastro intestinal specialist. I didn’t know at that time if one day my daughter might be a college student, as she is now, of if she might be non-verbal, communicating only by yelling, spinning, smearing her feces. It was a horrible thought to contemplate, and a horrible time in our lives.
I can understand, to some degree, the desire to see oneself as on the spectrum and yet normal. The desire to see this as merely any other character trait. The desire to see this as diversity. As a spectrum, I think it is possible, at some point on the spectrum, to do that. But as you go along the spectrum--oh lets call it ‘left’ on the spectrum rather than lower down, to appease the ND--it’s impossible for me, as a mother, to do that. It’s impossible for me to remember those days when my child had bowel movements every ten tens, her behavior getting more and more hysterical as the days went by, and not say “This is WRONG.”
When my oldest was four and evaluated for autism but not diagnosed, it was then that I contacted Autism Research Institute. I spoke with Dr. Rimland, and he was recommending vitamin B6, megadoses of it. In a B vitamin complex. I didn’t want to give it to my child because it was untested by the main stream medical establishment (it’s so hard for me now to imagine there was a day when I trust that! Lol), so I took the vitamins myself. And it helped me. Not one hundred percent, but it helped.
I have to say that I do feel I have a bit of common ground with the neurodiverse, in that I’ve always felt that my disability wasn’t all that much of a disability. I could listen, and learn, and speak if I needed something, and explain to other people what I felt needed to be done if I had some goal in mind. The only real symptoms, I felt, were the inability to chit chat. Although who knows what others see when they see me? I should say also that I don’t make a lot of eye contact with others when I speak with them. But I didn’t ever feel that this should affect how other people treat me, and yet it has and it does. There is no doubt about it, aspies do get special treatment. And I have not always liked that special treatment. Most of the time I try not to dwell on that.
I’m doing ok. I no longer work outside of the home. Today I’m busy sending letters to ABC sponsors. I’m rather unhappy with their recent episode of Private Practice, and I’m letting the people who pay to buy commercials which are shown on the network know this. Have you seen the episode, or heard about it? The measles, portrayed as maybe a teensy bit less horrific of a plague than ebola! Imagine that. You see, I am fifty years old, and I remember the measles. I never knew of a person harmed by it.
There are a lot of people who don’t like a lot of the things I have to say. But one thing is for sure, although I’ve never been good with chit chat, I am certainly able to speak about things that spark my interest. In fact, one might even say I get a tad fixated, at times. I think sometimes ‘fixated’ isn’t so bad, although the Pshrinks and the Doctors might say otherwise.
Welcome :)
Posted by: Robin Nemeth | January 14, 2009 at 09:39 AM
Jake is treating medical conditions. It is absurd to question that.
Posted by: Stagmom | January 14, 2009 at 09:11 AM
Hi Jake,
Thank you for your courage to share this inspiring story. there is just one thing I don't understand, you write you accept your condition yet you are trying to look for ways to reverse the 'damage'.
Both my children have Aspergers and for me accepting them for who they are is not looking for ways to reverse 'the damage'. I don't think they are damaged, just different from me in many positive and beautiful ways.
Posted by: Joy de Vries | January 14, 2009 at 09:03 AM
AS Man, I can promise you, we feel nothing but pride and admiration for Jake for wanting to be the best, most healthy, actively engaged man he can be. Why on earth should a person with autism NOT be allowed to make his body and mind feel better?
We pray for (and work toward)the day when our own children, many of whom can not speak or tend to their most basic human needs, are able to achieve Jake's level of success. Or even your level of success, AS man, minus the desire to tear down a fellow person with autism, of course.
You will have no respect from NT's if you can not give respect to a fellow person with autism. Imagine a person with diabetes berating a fellow diabetic for using insulin. That's how mean spirited you sound to my ears.
My daughter with autism learned to tie her shoes thanks to the many treatments and therapies she received. Would you have preferred we just let her languish?
By the way, at many of our autism conferenced we discuss how to help adults feel better so that they too can function to the best of their ability. No one is left out.
I'm glad you commented so that we could have this conversation. It's important. Thank you.
Kim
Posted by: Stagmom | January 14, 2009 at 08:48 AM
Jake,
Thank you so much for stepping forward. I hope that your honesty and courage will help other people to do the same.
Posted by: Terri Lewis | January 14, 2009 at 08:35 AM
Thank you Jake for sharing your story. As many of our children can't speak, it is so helpful to hear from people with autism spectrum disorders who are doing biomedical treatments. It was a very sad day for me when I told my daughter she had autism and mercury. But, the time had come I thought it was important for her to know. I wish you the best of luck and hope you will continue to write about your experiences.
Posted by: Libby | January 14, 2009 at 08:23 AM
Managing Editor's Note: I'm running this so people can see what Jake exposes himself to from people with autism who do not respect other people with autism. A bitter irony.
Jake,
The only thing that is toxic is your belief system.
You are disempowering autistics everywhere with your support of bad science. The only reason they sympathesize with you is that they feel sorry for you. If you took your place as an autistic man with pride they will hate you for it.
See my blog theasman.blogspot.com on house autistics and autistic rights
Your friend
The AS Man
Posted by: The AS Man | January 14, 2009 at 08:20 AM
Good morning, Jake. The Silence of the Lambs is one of my favorite movies. Clarice says to Dr. Lecter, "Can you turn that high powered microscope onto yourself?" meaning can you really look at what's going on inside of yourself. This isn't an easy task for any of us. That you have the self awareness and courage to share it with us is a real gift to our readers. I realize there will be many people with HFA and Aspergers who will berate you for this post. Fear often brings out anger. And many people don't have your ability to be so introspective.
Thank you for bringing a voice of autism to our site. It's so important that you, as a person with autism, are able to share your experiences (good, bad and ugly) with us "nypicals" as John Robison calls us!
Thank you, Jake.
KIM
Posted by: Stagmom | January 14, 2009 at 08:12 AM
Jake, thank you for sharing your story with us. I'm forwarding links to your AoA contributions to a friend. Very enlightening indeed!
Posted by: Jeanne | January 14, 2009 at 08:08 AM
Jake,
Great article. First, thank you for sharing your views. It's really nice to hear that there are affected adults who treat their issues as we treat our children's issues.
I don't understand why the ND get all bent out of shape about vitamins and make claims that we are seeing quacks who prescibe expensive vitamins that do nothing.
My son has been taking a specifically designed vitamin protocol for several years.
I take vitamins myself (when I remember to take them). And when I do- I feel better. My cognitive functioning is better, I have more energy, I have more sound sleep, and other postitive effects.
I would imagine someone with Aspergers or autism would feel the same as I do when taking them. Thank you for confirming what I already suspected.
And thank you for letting us know that it is OK to identify what ails our children and treat them. There are so many angry aspie bloggers out here who tell us we are wrong to do that.
Keep writing Jake I do enjoy reading your views.
Posted by: Andrea | January 14, 2009 at 07:56 AM
Hi Jake,
Thanks for your informative and heart-warming story. It's always so interesting to hear the point of view from someone who is on the spectrum.
The autism community's fight will go on until the epidemic is stopped and our children are helped.
Wishing you the best in school and your future career.
Maurine
Posted by: Maurine Meleck | January 14, 2009 at 07:53 AM