Sunday, June 12, 2011
The Thinking Person's Guide to Autism: IMFAR 2011: Dr. Eric Courchesne on the Development...
The Thinking Person's Guide to Autism: IMFAR 2011: Dr. Eric Courchesne on the Development...: "IMFAR 2011 Keynote: The Developmental Neurobiology of Autism: The First Steps and the World Ahead Eric Courchesne , UCSD Autism Center of E..."
Saturday, June 4, 2011
Drowning in the autism bog alone...
So my son has autism. He got the educational label last June and the medical diagnosis on Tuesday (May 31). So here's the rest of the story. I'm a single mom, I have a 'partner' meaning someone I live with and share a bed with. His 15 year old daughter lives with us also and she essentially has free reign to do whatever she wants when she wants as long as she calls and checks in with dad occasionally and gets her homework done. She's rarely here, that might change if she had her own room, but I doubt it. I don't work since I got fired from my job in October and job market is pretty slim for most people let alone someone who has no formal education including a high school diploma.
My partner was diagnosed about 6 months ago with PTSD, anxiety and Schizotypal Personality Disorder (a milder form of schizophrenia) and has difficulty leaving the bedroom, let alone walking outside the apartment to go somewhere people might be. Even the thought of talking on the phone to someone he doesn't know can cause anxiety induced pain that travels through his body in waves and completely debilitates him to the point he can only lay down in bed and wait for it to pass, which can sometimes take hours.
With my son's autism diagnosis, this means extensive appointments for therapy, visits to the doctor and other specialists that will need to happen several days each week. That being the case, my partner won't be able to take him to these appointments. That leaves it on me to be available to take him which takes me out of the job market even if there was a job I could find. I don't have a car so have to use public transportation to get anywhere. Most locations we'd need to go to are at least two bus transfers and at least one hour of travel or waiting time. If the appointment takes two or three hours, then we are looking at an all day venture which would be impossible for me to do if I was working full time to support my household as needed (we're talking, rent, food, bills and basic necessities like soap, shampoo, toilet paper, bus tickets, diapers) and not allowing for anything extra or fun (like clothes or movies) because we aren't able to justify that expense. I can't be there to take my son to his appointments and work with him at home during the day, as well as work full time. Taking several days off work each week to be able to take my son to his appointments wouldn't be full time work, even if I had unlimited paid time off which most companies don't give. I could work grave yard or swing shift, but then I'd have to wonder when I would sleep or spend time with my son? My son already gets SSI disability which isn't enough to even cover rent, let alone any of the other expenses we have. We are living off food stamps which thankfully allow us to eat. My son is four and still in diapers which are a fairly major expense (we spend more on diapers and baby wipes then we do on toilet paper, shampoo and shower soap combined).
I have no friends that aren't cyber friends and my family pretty much gave me up as a bad job a few months after my son was born. Friends to turn to for support? Non existent. Family to help out and provide assistance and support? That's a laugh, they didn't help or support me when we were talking unless constant criticism and put downs is considered help and support. My family couldn't add anything positive to my life so I had to sever contact, which they were all too happy to agree to. I'm apparently the black sheep of the family because I have a mind of my own and my own idea of what makes me happy and it isn't following the same things they do (I've seen their lives and I wouldn't call what they have happiness but misery). I got tired of them telling me what was wrong with my life and trying to tell me I'm stupid for living the way I do. What's so wrong with it anyway if I'm happy and content, for the most part? Obviously I didn't plan on having autism be part of my life, but then who does? You would think, since I am happier now then I ever was before when trying to live the way I'd been told all my life I should in order to gain happiness, that my family would be happy for me. But no, since I'm happy, and obviously they aren't, they need to try and pull me down to their level of misery because misery loves company and who better to share that misery then your siblings? But I don't want to spend the rest of my life miserable, I want to be happy, I like being happy so I had to politely decline to take part in their cycle of judgment, bad attitude and hearing all the time what was wrong with me and my life. Last time I checked it was my life and, like it or not, if it works for me, that's all that should matter to people who are supposed to care about me.
Anyway, went off on a tangent there a bit, I still obviously have some bitter feelings I need to overcome. I miss my family and I do love them, but I don't want them to be telling me what's wrong with me anymore. I don't want them putting me down and making me feel bad. All that does is lead a person to resent the company of the people they spend time with. I don't think I'm unique in feeling this way, it's just a shame when it's family because even though we don't speak, there's still that blood connection that will always be there. It's a shame for them because they are missing out on being a part of the life of my adorable, uniquely gifted and challenging son and sharing his accomplishments and progress with him and the pain of living with autism. Obviously I don't wish pain on them, although they might disagree with that, but sharing grief and pain makes it easier to handle and cope with. But my pain isn't their pain because autism doesn't touch their lives.
So what can a person do when life is such a struggle and there are times when a person wishes life would end and the struggle would be over? Nothing. Continue on. Live day to day and sometimes hour to hour or minute to minute. Rejoice in the days that pass without a meltdown and food that is given is eaten without a fight. Take pride in the progress you see your child make even though other children his age can dress themselves, go pee pee and poo poo in the potty, know what their favorite food is and can tell you or even have the ability to have a conversation or tell you a story or sit still to read a book together rather then just watch the pages turn because they like the way it looks. Learn to cherish each hug and kiss, even if you have to ask for it and they are only given when the child feels like doing it. Be patient when you call his name or ask a question knowing eventually it will get there and he will give a response and we'll be able to move on to the next task at hand. Try to block out the movies that he wants to watch over and over and over, all day, every day for weeks on end until you just can't take it anymore. Hope that some day you'll find someone you can talk to, who will relate to you, who doesn't mind coming for a visit because you can't get to them for various reasons. Try not to dwell on how lonely you feel, how isolated you are and how some people will give you dirty looks or impatient derisive snorts when your son loses it on the bus or in the grocery store or even while you're crossing the street (because someone felt the need to lay on their horn at someone who cut them off and the sound is too much for your child). I've often contemplated getting a couple sheets of poster board, making one of those sandwich posters that people wear that says, "My son has autism. He may scream, yell, hit me or do other strange things. Please be patient and DON'T try to tell me I need to discipline him more." If I wear that every time I go outside, maybe then people would begin to understand. Maybe people are just so intolerant that they won't care and say I should stay home if I can't control my child. To those people, who have been many, all I can think to say is you try living one day with a child with autism and see if you do any better and giving them the middle finger. Spankings? Yeah, right! A child with autism isn't phased by discipline like that. In my son's case, he either laughs or he starts to hit himself. All I can do is try to calm him down. If we are grocery shopping I can't do what the 'experts' suggest and leave the store and go shopping on another day. That is money I can't afford to waste on a bus ticket. When we go shopping, I have to get it done, even if my son doesn't want to cooperate because there's too much noise and too many people.
So this is the life of a person with a child that has autism. No freedom to do what you want. Inability to look toward a future and plan. Great consideration must be made days, weeks or months in advance, and telling your child what is happening ahead of time so he's ready for it when it comes, or at least as ready as he can be. I have no control over the jerk who decides he's going to talk on his cell phone really loudly, or the teenage girls who keep laughing really loud, nor can I control the people who feel they need to correct me on my child rearing abilities every time they see me. I can't make plans to go out on the weekends. For me there is no weekend. It's just one day the same after the other with the exception of maybe going somewhere on the bus but it's generally something that is needed rather then an outing meant for fun.
I miss being around adults, playing pool, being able to have people over who doesn't mind toys in little lines or circles all over the house that have to be left where they are so my son doesn't have a meltdown. We don't clean up toys because if they were moved from where he puts them, it's like a part of his world has ended and he won't be calmed until he can put them back where he needs them to be. I haven't even mentioned sleep deprivation because my son doesn't go to sleep right away when I put him to bed and if I didn't stay up to make sure he falls asleep, there's a constant worry about him walking out the front door to go and chase down the spinning tires on the cars that drive along the freeway. Not to mention if the noise level in the morning is too high when my partner's daughter is getting read for school, my son will wake with her and be awake from that point on. That happens as early as 5AM, sometimes 6, if I'm lucky he'll sleep until 8AM. I never get to sleep until noon or even 10AM, so even if I could afford to go out for fun, I wouldn't be able to because I wouldn't be able to function the next day. I don't even want to think what kind of trauma it's going to cause him when and if we are able to move. Everything will be different then and it will take several days, maybe even weeks or months to get everything unpacked and put away once we do move.
This is why I do day by day or hour by hour. Anything else is just too much to think about because I start to panic because I don't know if I can do that and can't make any plans for it in case I can't. Would you like to trade places with me? My guess is you wouldn't.
My partner was diagnosed about 6 months ago with PTSD, anxiety and Schizotypal Personality Disorder (a milder form of schizophrenia) and has difficulty leaving the bedroom, let alone walking outside the apartment to go somewhere people might be. Even the thought of talking on the phone to someone he doesn't know can cause anxiety induced pain that travels through his body in waves and completely debilitates him to the point he can only lay down in bed and wait for it to pass, which can sometimes take hours.
With my son's autism diagnosis, this means extensive appointments for therapy, visits to the doctor and other specialists that will need to happen several days each week. That being the case, my partner won't be able to take him to these appointments. That leaves it on me to be available to take him which takes me out of the job market even if there was a job I could find. I don't have a car so have to use public transportation to get anywhere. Most locations we'd need to go to are at least two bus transfers and at least one hour of travel or waiting time. If the appointment takes two or three hours, then we are looking at an all day venture which would be impossible for me to do if I was working full time to support my household as needed (we're talking, rent, food, bills and basic necessities like soap, shampoo, toilet paper, bus tickets, diapers) and not allowing for anything extra or fun (like clothes or movies) because we aren't able to justify that expense. I can't be there to take my son to his appointments and work with him at home during the day, as well as work full time. Taking several days off work each week to be able to take my son to his appointments wouldn't be full time work, even if I had unlimited paid time off which most companies don't give. I could work grave yard or swing shift, but then I'd have to wonder when I would sleep or spend time with my son? My son already gets SSI disability which isn't enough to even cover rent, let alone any of the other expenses we have. We are living off food stamps which thankfully allow us to eat. My son is four and still in diapers which are a fairly major expense (we spend more on diapers and baby wipes then we do on toilet paper, shampoo and shower soap combined).
I have no friends that aren't cyber friends and my family pretty much gave me up as a bad job a few months after my son was born. Friends to turn to for support? Non existent. Family to help out and provide assistance and support? That's a laugh, they didn't help or support me when we were talking unless constant criticism and put downs is considered help and support. My family couldn't add anything positive to my life so I had to sever contact, which they were all too happy to agree to. I'm apparently the black sheep of the family because I have a mind of my own and my own idea of what makes me happy and it isn't following the same things they do (I've seen their lives and I wouldn't call what they have happiness but misery). I got tired of them telling me what was wrong with my life and trying to tell me I'm stupid for living the way I do. What's so wrong with it anyway if I'm happy and content, for the most part? Obviously I didn't plan on having autism be part of my life, but then who does? You would think, since I am happier now then I ever was before when trying to live the way I'd been told all my life I should in order to gain happiness, that my family would be happy for me. But no, since I'm happy, and obviously they aren't, they need to try and pull me down to their level of misery because misery loves company and who better to share that misery then your siblings? But I don't want to spend the rest of my life miserable, I want to be happy, I like being happy so I had to politely decline to take part in their cycle of judgment, bad attitude and hearing all the time what was wrong with me and my life. Last time I checked it was my life and, like it or not, if it works for me, that's all that should matter to people who are supposed to care about me.
Anyway, went off on a tangent there a bit, I still obviously have some bitter feelings I need to overcome. I miss my family and I do love them, but I don't want them to be telling me what's wrong with me anymore. I don't want them putting me down and making me feel bad. All that does is lead a person to resent the company of the people they spend time with. I don't think I'm unique in feeling this way, it's just a shame when it's family because even though we don't speak, there's still that blood connection that will always be there. It's a shame for them because they are missing out on being a part of the life of my adorable, uniquely gifted and challenging son and sharing his accomplishments and progress with him and the pain of living with autism. Obviously I don't wish pain on them, although they might disagree with that, but sharing grief and pain makes it easier to handle and cope with. But my pain isn't their pain because autism doesn't touch their lives.
So what can a person do when life is such a struggle and there are times when a person wishes life would end and the struggle would be over? Nothing. Continue on. Live day to day and sometimes hour to hour or minute to minute. Rejoice in the days that pass without a meltdown and food that is given is eaten without a fight. Take pride in the progress you see your child make even though other children his age can dress themselves, go pee pee and poo poo in the potty, know what their favorite food is and can tell you or even have the ability to have a conversation or tell you a story or sit still to read a book together rather then just watch the pages turn because they like the way it looks. Learn to cherish each hug and kiss, even if you have to ask for it and they are only given when the child feels like doing it. Be patient when you call his name or ask a question knowing eventually it will get there and he will give a response and we'll be able to move on to the next task at hand. Try to block out the movies that he wants to watch over and over and over, all day, every day for weeks on end until you just can't take it anymore. Hope that some day you'll find someone you can talk to, who will relate to you, who doesn't mind coming for a visit because you can't get to them for various reasons. Try not to dwell on how lonely you feel, how isolated you are and how some people will give you dirty looks or impatient derisive snorts when your son loses it on the bus or in the grocery store or even while you're crossing the street (because someone felt the need to lay on their horn at someone who cut them off and the sound is too much for your child). I've often contemplated getting a couple sheets of poster board, making one of those sandwich posters that people wear that says, "My son has autism. He may scream, yell, hit me or do other strange things. Please be patient and DON'T try to tell me I need to discipline him more." If I wear that every time I go outside, maybe then people would begin to understand. Maybe people are just so intolerant that they won't care and say I should stay home if I can't control my child. To those people, who have been many, all I can think to say is you try living one day with a child with autism and see if you do any better and giving them the middle finger. Spankings? Yeah, right! A child with autism isn't phased by discipline like that. In my son's case, he either laughs or he starts to hit himself. All I can do is try to calm him down. If we are grocery shopping I can't do what the 'experts' suggest and leave the store and go shopping on another day. That is money I can't afford to waste on a bus ticket. When we go shopping, I have to get it done, even if my son doesn't want to cooperate because there's too much noise and too many people.
So this is the life of a person with a child that has autism. No freedom to do what you want. Inability to look toward a future and plan. Great consideration must be made days, weeks or months in advance, and telling your child what is happening ahead of time so he's ready for it when it comes, or at least as ready as he can be. I have no control over the jerk who decides he's going to talk on his cell phone really loudly, or the teenage girls who keep laughing really loud, nor can I control the people who feel they need to correct me on my child rearing abilities every time they see me. I can't make plans to go out on the weekends. For me there is no weekend. It's just one day the same after the other with the exception of maybe going somewhere on the bus but it's generally something that is needed rather then an outing meant for fun.
I miss being around adults, playing pool, being able to have people over who doesn't mind toys in little lines or circles all over the house that have to be left where they are so my son doesn't have a meltdown. We don't clean up toys because if they were moved from where he puts them, it's like a part of his world has ended and he won't be calmed until he can put them back where he needs them to be. I haven't even mentioned sleep deprivation because my son doesn't go to sleep right away when I put him to bed and if I didn't stay up to make sure he falls asleep, there's a constant worry about him walking out the front door to go and chase down the spinning tires on the cars that drive along the freeway. Not to mention if the noise level in the morning is too high when my partner's daughter is getting read for school, my son will wake with her and be awake from that point on. That happens as early as 5AM, sometimes 6, if I'm lucky he'll sleep until 8AM. I never get to sleep until noon or even 10AM, so even if I could afford to go out for fun, I wouldn't be able to because I wouldn't be able to function the next day. I don't even want to think what kind of trauma it's going to cause him when and if we are able to move. Everything will be different then and it will take several days, maybe even weeks or months to get everything unpacked and put away once we do move.
This is why I do day by day or hour by hour. Anything else is just too much to think about because I start to panic because I don't know if I can do that and can't make any plans for it in case I can't. Would you like to trade places with me? My guess is you wouldn't.
Friday, June 3, 2011
Vaccines and Autism
As a mother of a child given an education label of Autism Spectrum Disorder just a year ago, and a medical diagnosis on Tuesday of Autistic Disorder (autism) and various other developmental delays and disorders, and also this same child being my youngest of six and the only child that was not vaccinated on schedule, not to mention the myriad of studies done to prove otherwise, I am astounded and annoyed that anti-vaccine autism parents continue to be so brazen in their attempts to force the world to believe their crackpot 'theory' that the autism their children have is an injury caused by vaccines.
These people's main claim that they are right, and the science is just cover up by the government and big pharma, is based on coincidence and nothing more. Their premise is this: My child was normal, healthy and happy up until they were about 18 months old and then they got their vaccines and it was almost instantaneous, like something snatched their soul. One day they were fine, the next day after getting their shots they were drastically different. The natural conclusion is since it happened right after their vaccines, the vaccine is to blame.
Here is why this is a ridiculous claim: Statistics show that 20 to 40 percent of children with autism show regression. Regression is normal or even faster then average development, and then a loss of abilities or back sliding to a previous or younger stage or age of development. For example, most children are able to babble by 12 months of age and by 18 months of age they should have several words, such as mommy, daddy, bye bye, hi, certain names for their favorite food and other simple things. From what I've heard about children with regressive autism, and in my own son's case, they had several words by 12 months so verbally were ahead of the curve and then by 18 months lost all ability to speak and reverted to babble or odd vocalizations like humming or grunting. My son actually would just utter the 'uh' sound repeatedly while he would be doing some other physical stim (self stimulating behavior such as rocking, hand flapping, spinning self or objects, lining things up or stacking things.)
By 18 months old, most communication symptoms of autism are present, either because the child never progressed to speech, or they regressed from limited speech back to babble or even no speech at all or guttural sounds. There are other symptoms that may manifest earlier and not be as obvious. My son began walking on his toes at 14 months old. He got to the point eventually when he would only walk on his toes, but that practice started gradually with him. He began to show obsessive behavior, endless flipping of pages in a book or catalog with no interest in what was on the page, or everything needing to be in a predictable pattern or location for him. It was around this same time when tantrums began to manifest and became increasingly violent and self abusive. He was always a happy baby before unless he was tired, hungry or sick and he was always inquisitive, wanting to get into everything and exploring places I wasn't aware he could get to. He lost his inquisitive nature also and became subdued , withdrawn and seemingly uncaring. He still liked to explore and climb and had no sense of danger for things that could hurt him. This resulted in him climbing the blinds in his bedroom window, falling and breaking his arm just after the 18 months mark. He was still happy, loved to be tickled, chased around the house as well as cuddled, as long as he was in the mood for it. He wouldn't and still doesn't accept hugs and kisses if he isn't in the mood.
My son doesn't have as much of a problem with eye contact as many children with autism do. He can look me in the eye, but if he holds it for too long it obviously pains him. For him he becomes overwhelmed in situations where there are a lot of people. He will separate himself physically as much as he can and stim on whatever happened to be close at hand for him. When he was just over two years old, his symptoms became so obvious I couldn't deny them anymore. A friend of mine was having a baby shower and my son and I went. There were other children there and I thought it would be really good for him to get out and spend time with other children. The fact that up until this time he didn't wasn't something that I even considered abnormal, just something that I thought was due to lack of available options for socialization.
My son looked at the other children, but that was it. He was more interested in the confetti decorations that were on the table, little plastic baby bottles, diaper pins, binkies and rattles. About two hours into the party, after everyone had eaten and presents had been opened, I realized my son had left my side. I had been holding him on my lap during the unwrapping of presents and since she had a lot this was quite a long time for little kids to sit still, but nearly from the moment we sat down and she began opening, he had been struggling to get away from me. I held him on my lap as long as I could until I was just too tired to hold him anymore. I released him and he took off. He stayed in the room but wasn't playing or sitting with the other children. He had taken a couple handfuls of the confetti under the table and was sorting it into piles of the same object, same color, lining them up in rows and continued to do this over and over and it was a good 30 minutes that he was there doing this. I didn't know this at first, I was just making sure that he stayed in my sight and didn't try to go outside. After the presents were all open and people began to meander about and do their own thing again, it became harder to keep an eye on my son so I went to bring him out from under the table. I watched him for several minutes once I noticed what he was doing and saw the intensity of focus he had while he was sorting the confetti. I looked around and became aware of just how loud it was in the room. There were a lot of people talking, music was playing, children were talking and screaming and there was a 9 month old who was crying and his mom apologizing loudly saying he was tired and hadn't had his nap yet so she needed to go. I suddenly realized that my son was overwhelmed and was seeking shelter and distraction from it all. I mean once I realized how much sound there actually was it almost overwhelmed me, but I hadn't gone under a table and began stimming on the confetti and that wasn't normal little kid behavior either. I was scared and shivers and chills rushed through me once the realization of what I was seeing hit me. We had had suspicions prior to this but this particular incident made it undeniable, it was very likely my son has autism.
For my son, his regression was gradual, so gradual in fact that I didn't notice it until I noticed it and that is what seemed sudden. I can't help but wonder how many of these other children's regression was also gradual and was just suddenly too obvious to ignore anymore right after vaccines.Nobody wants to look at their child and see developmental delay or autism. Once the autism diagnosis hits you over the head, it can still be a while before it is real. It's very easy to deny it and say there must be another answer. I believe (and this is my own personal opinion, not research or study based) that many people who believe in this vaccine autism link are looking for a reason, something to blame and ways to cure it because they don't want to accept their child will never be normal again.
For me, once I heard the diagnosis, I began to do research. Naturally, the vaccine autism thing swam across my mind and I nearly jumped on that. Then a few months later I remembered, my son wasn't vaccinated on schedule like these other children were who's parents are claiming it was the vaccines. They are two schools of thought with regard to this, that the MMR (measles, mumps and rubella) vaccine caused autism, based most heavily on Andrew Wakefield's study that was later found to be fraudulent earning him a revocation of his license to practice medicine, or the thimerosal (an enthymercury preservative that was found in most routine children's vaccines up until 2002). The argument for the MMR vaccine was simply because it was given to many children around the same time symptoms of autism began to manifest or became too obvious to ignore. The thimerosal theory was so ridiculous, particularly now that people continue to believe it.
Due to parental concern of vaccines containing anything even remotely related to mercury at all (even though testing and testing and testing was not able to find that mercury poisoning could result from this preservative because it was present in such small amounts, not to mention that there wasn't any real way for them to test this as the 'mercury' part of it was so insubstantial, it was determined that all routine childhood vaccines would no longer be manufactured with ethylmercury preservative. This process began in 1997 and was 5 years before previous stores of children's vaccines with thimerosal were exhausted and the newly manufactured thimerosal free vaccines were available. It was stated most clearly by these thimerosal dooms day sayers that with the removal of thimerosal, autism cases would not only stop rising but begin to decline. In 2002 it was stated that 1 in ever 166 children were diagnosed with autism. In 2010, when my son was diagnosed it was 1 in 110. Today it's closer to 1 in 90 which is more then 1% of the current population. Even if you choose to disregard the science and studies done in any potential link, common sense should be able to tell you, since vaccines for children no longer contain thimerosal, yet autism rates continue to rise, obviously it isn't the thimerosal in vaccines that cause it. People still claim mercury poisoning from vaccines as the cause of their child's autism though, even nearly a decade after thimerosal has been removed. Also, if you look up the symptoms of mercury poisoning and autism you will see their are vastly different, so autism isn't mercury poisoning.
The next culprit is the MMR vaccine being the cause. This is based mostly on the claim by Andrew Wakefield that the measles part of the MMR vaccine would cause damage in the children's intestinal tissue and cause some form of inflammatory bowel syndrome and the resulting illness and distress from that caused brain damage which resulted in autism. It was claimed to be a new syndrome which was dubbed autistic enterocolitis. Even though initially, him and the coauthors of this study stated unequivocally their theory wasn't proven, Wakefield had given a press release which called for removal of the use of the triple vaccine jab and replaced by single jabs one year apart. This press conference is what sparked the vaccine scare and led to decreased rates of vaccination resulting in a rise in measles cases, causing serious injury and several deaths. When Wakefield's research was found to be fraudulent and his entire theory based on profit (he was paid for his efforts by a lawyer hoping to represent the children involved in a law suit against the pharmaceutical company who made the vaccine and he had shortly after this submitted a patent for a single dose oral measles vaccine) and other conflicts of interest, not to mention it was found (and parents of the children the study was based on have confirmed this) the data he used was fabricated, adjusted to fit and support the theory. He paid the children to allow him to take their blood at a child's birthday party and submitted them to procedures against the authority of the hospital he was working at and even reports of abuse of the children were mentioned, though no details were given. He continues to defend himself and instead of this entire debate dying like it should, it's turned instead into a government cover up of the truth.
Some have asked why this debate continues and I have asked that myself. To me, the science is clear. To the anti-vaccine people (they don't like you to call them that, they want to be called pro-vaccine safety, right...) they are still clammouring for that all inclusive, US only study showing rates of autism between fully vaccinated versus fully unvaccinated. They keep claiming once that study is done they will accept the results. They don't accept the results of the Danish Study conducted over a ten year period which shows the incidence of autism is the same between the two different groups but the rate of increase is also the same over the period of time they were researching. Why won't they accept this? It wasn't done in the US. Oh, and because now a minor player in the study who didn't actually have anything to do with the study research, results or implementation of data but in charge of the grant money, was indicted for fraud against the CDC, taking over $1 million of that grant money and routing it to his own personal account.
One person's greed shouldn't debunk an entire study especially if that person never had any part in the actual research end of things. They are claiming of course, if we can do it to Andrew Wakefield, they can do it to us... Hmm, there's quite a difference between one man (in several that were involved) who never touched the study data, committing fraud in a monetary sense and one man who was the author of the study, oversaw every aspect of the research and was essentially the Mac Daddy of the entire thing to commit fraud by paying off children for their blood, falsifying medical records, performing unwarranted and painful procedures on the children and then not being able to give step by step instructions on how he was able to reach the results he got so nobody anywhere was ever able to reproduce the results he claimed he got. Can you see a difference? I can, why can't the anti-vaxers?
The entire thing is just so over done and too drawn out. I know their fire is fizzling, but there are a few dry pieces of tinder they continue to jump on and try to fan into a flame again. Their time is just about up and I'll be very glad when it is because I want to see some real research being done.
These people's main claim that they are right, and the science is just cover up by the government and big pharma, is based on coincidence and nothing more. Their premise is this: My child was normal, healthy and happy up until they were about 18 months old and then they got their vaccines and it was almost instantaneous, like something snatched their soul. One day they were fine, the next day after getting their shots they were drastically different. The natural conclusion is since it happened right after their vaccines, the vaccine is to blame.
Here is why this is a ridiculous claim: Statistics show that 20 to 40 percent of children with autism show regression. Regression is normal or even faster then average development, and then a loss of abilities or back sliding to a previous or younger stage or age of development. For example, most children are able to babble by 12 months of age and by 18 months of age they should have several words, such as mommy, daddy, bye bye, hi, certain names for their favorite food and other simple things. From what I've heard about children with regressive autism, and in my own son's case, they had several words by 12 months so verbally were ahead of the curve and then by 18 months lost all ability to speak and reverted to babble or odd vocalizations like humming or grunting. My son actually would just utter the 'uh' sound repeatedly while he would be doing some other physical stim (self stimulating behavior such as rocking, hand flapping, spinning self or objects, lining things up or stacking things.)
By 18 months old, most communication symptoms of autism are present, either because the child never progressed to speech, or they regressed from limited speech back to babble or even no speech at all or guttural sounds. There are other symptoms that may manifest earlier and not be as obvious. My son began walking on his toes at 14 months old. He got to the point eventually when he would only walk on his toes, but that practice started gradually with him. He began to show obsessive behavior, endless flipping of pages in a book or catalog with no interest in what was on the page, or everything needing to be in a predictable pattern or location for him. It was around this same time when tantrums began to manifest and became increasingly violent and self abusive. He was always a happy baby before unless he was tired, hungry or sick and he was always inquisitive, wanting to get into everything and exploring places I wasn't aware he could get to. He lost his inquisitive nature also and became subdued , withdrawn and seemingly uncaring. He still liked to explore and climb and had no sense of danger for things that could hurt him. This resulted in him climbing the blinds in his bedroom window, falling and breaking his arm just after the 18 months mark. He was still happy, loved to be tickled, chased around the house as well as cuddled, as long as he was in the mood for it. He wouldn't and still doesn't accept hugs and kisses if he isn't in the mood.
My son doesn't have as much of a problem with eye contact as many children with autism do. He can look me in the eye, but if he holds it for too long it obviously pains him. For him he becomes overwhelmed in situations where there are a lot of people. He will separate himself physically as much as he can and stim on whatever happened to be close at hand for him. When he was just over two years old, his symptoms became so obvious I couldn't deny them anymore. A friend of mine was having a baby shower and my son and I went. There were other children there and I thought it would be really good for him to get out and spend time with other children. The fact that up until this time he didn't wasn't something that I even considered abnormal, just something that I thought was due to lack of available options for socialization.
My son looked at the other children, but that was it. He was more interested in the confetti decorations that were on the table, little plastic baby bottles, diaper pins, binkies and rattles. About two hours into the party, after everyone had eaten and presents had been opened, I realized my son had left my side. I had been holding him on my lap during the unwrapping of presents and since she had a lot this was quite a long time for little kids to sit still, but nearly from the moment we sat down and she began opening, he had been struggling to get away from me. I held him on my lap as long as I could until I was just too tired to hold him anymore. I released him and he took off. He stayed in the room but wasn't playing or sitting with the other children. He had taken a couple handfuls of the confetti under the table and was sorting it into piles of the same object, same color, lining them up in rows and continued to do this over and over and it was a good 30 minutes that he was there doing this. I didn't know this at first, I was just making sure that he stayed in my sight and didn't try to go outside. After the presents were all open and people began to meander about and do their own thing again, it became harder to keep an eye on my son so I went to bring him out from under the table. I watched him for several minutes once I noticed what he was doing and saw the intensity of focus he had while he was sorting the confetti. I looked around and became aware of just how loud it was in the room. There were a lot of people talking, music was playing, children were talking and screaming and there was a 9 month old who was crying and his mom apologizing loudly saying he was tired and hadn't had his nap yet so she needed to go. I suddenly realized that my son was overwhelmed and was seeking shelter and distraction from it all. I mean once I realized how much sound there actually was it almost overwhelmed me, but I hadn't gone under a table and began stimming on the confetti and that wasn't normal little kid behavior either. I was scared and shivers and chills rushed through me once the realization of what I was seeing hit me. We had had suspicions prior to this but this particular incident made it undeniable, it was very likely my son has autism.
For my son, his regression was gradual, so gradual in fact that I didn't notice it until I noticed it and that is what seemed sudden. I can't help but wonder how many of these other children's regression was also gradual and was just suddenly too obvious to ignore anymore right after vaccines.Nobody wants to look at their child and see developmental delay or autism. Once the autism diagnosis hits you over the head, it can still be a while before it is real. It's very easy to deny it and say there must be another answer. I believe (and this is my own personal opinion, not research or study based) that many people who believe in this vaccine autism link are looking for a reason, something to blame and ways to cure it because they don't want to accept their child will never be normal again.
For me, once I heard the diagnosis, I began to do research. Naturally, the vaccine autism thing swam across my mind and I nearly jumped on that. Then a few months later I remembered, my son wasn't vaccinated on schedule like these other children were who's parents are claiming it was the vaccines. They are two schools of thought with regard to this, that the MMR (measles, mumps and rubella) vaccine caused autism, based most heavily on Andrew Wakefield's study that was later found to be fraudulent earning him a revocation of his license to practice medicine, or the thimerosal (an enthymercury preservative that was found in most routine children's vaccines up until 2002). The argument for the MMR vaccine was simply because it was given to many children around the same time symptoms of autism began to manifest or became too obvious to ignore. The thimerosal theory was so ridiculous, particularly now that people continue to believe it.
Due to parental concern of vaccines containing anything even remotely related to mercury at all (even though testing and testing and testing was not able to find that mercury poisoning could result from this preservative because it was present in such small amounts, not to mention that there wasn't any real way for them to test this as the 'mercury' part of it was so insubstantial, it was determined that all routine childhood vaccines would no longer be manufactured with ethylmercury preservative. This process began in 1997 and was 5 years before previous stores of children's vaccines with thimerosal were exhausted and the newly manufactured thimerosal free vaccines were available. It was stated most clearly by these thimerosal dooms day sayers that with the removal of thimerosal, autism cases would not only stop rising but begin to decline. In 2002 it was stated that 1 in ever 166 children were diagnosed with autism. In 2010, when my son was diagnosed it was 1 in 110. Today it's closer to 1 in 90 which is more then 1% of the current population. Even if you choose to disregard the science and studies done in any potential link, common sense should be able to tell you, since vaccines for children no longer contain thimerosal, yet autism rates continue to rise, obviously it isn't the thimerosal in vaccines that cause it. People still claim mercury poisoning from vaccines as the cause of their child's autism though, even nearly a decade after thimerosal has been removed. Also, if you look up the symptoms of mercury poisoning and autism you will see their are vastly different, so autism isn't mercury poisoning.
The next culprit is the MMR vaccine being the cause. This is based mostly on the claim by Andrew Wakefield that the measles part of the MMR vaccine would cause damage in the children's intestinal tissue and cause some form of inflammatory bowel syndrome and the resulting illness and distress from that caused brain damage which resulted in autism. It was claimed to be a new syndrome which was dubbed autistic enterocolitis. Even though initially, him and the coauthors of this study stated unequivocally their theory wasn't proven, Wakefield had given a press release which called for removal of the use of the triple vaccine jab and replaced by single jabs one year apart. This press conference is what sparked the vaccine scare and led to decreased rates of vaccination resulting in a rise in measles cases, causing serious injury and several deaths. When Wakefield's research was found to be fraudulent and his entire theory based on profit (he was paid for his efforts by a lawyer hoping to represent the children involved in a law suit against the pharmaceutical company who made the vaccine and he had shortly after this submitted a patent for a single dose oral measles vaccine) and other conflicts of interest, not to mention it was found (and parents of the children the study was based on have confirmed this) the data he used was fabricated, adjusted to fit and support the theory. He paid the children to allow him to take their blood at a child's birthday party and submitted them to procedures against the authority of the hospital he was working at and even reports of abuse of the children were mentioned, though no details were given. He continues to defend himself and instead of this entire debate dying like it should, it's turned instead into a government cover up of the truth.
Some have asked why this debate continues and I have asked that myself. To me, the science is clear. To the anti-vaccine people (they don't like you to call them that, they want to be called pro-vaccine safety, right...) they are still clammouring for that all inclusive, US only study showing rates of autism between fully vaccinated versus fully unvaccinated. They keep claiming once that study is done they will accept the results. They don't accept the results of the Danish Study conducted over a ten year period which shows the incidence of autism is the same between the two different groups but the rate of increase is also the same over the period of time they were researching. Why won't they accept this? It wasn't done in the US. Oh, and because now a minor player in the study who didn't actually have anything to do with the study research, results or implementation of data but in charge of the grant money, was indicted for fraud against the CDC, taking over $1 million of that grant money and routing it to his own personal account.
One person's greed shouldn't debunk an entire study especially if that person never had any part in the actual research end of things. They are claiming of course, if we can do it to Andrew Wakefield, they can do it to us... Hmm, there's quite a difference between one man (in several that were involved) who never touched the study data, committing fraud in a monetary sense and one man who was the author of the study, oversaw every aspect of the research and was essentially the Mac Daddy of the entire thing to commit fraud by paying off children for their blood, falsifying medical records, performing unwarranted and painful procedures on the children and then not being able to give step by step instructions on how he was able to reach the results he got so nobody anywhere was ever able to reproduce the results he claimed he got. Can you see a difference? I can, why can't the anti-vaxers?
The entire thing is just so over done and too drawn out. I know their fire is fizzling, but there are a few dry pieces of tinder they continue to jump on and try to fan into a flame again. Their time is just about up and I'll be very glad when it is because I want to see some real research being done.
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