The Vaccine Controversy: A Personal Perspective from a Self-Advocate with Autism

April 4, 2017

James Williams is an adult with autism and a TMR friend. We find that his perspective on life is always valuable, but never more so than during Autism Awareness Month.

I have decided to write this blog post not as a representation of the perspective of most self-advocates with autism, but as a personal perspective that shares my own beliefs regarding the vaccine controversy, and why I eventually grew to support the anti-vaccine movement.

I am aware that the majority of self-advocates with autism support (and even worship) vaccines, and I have built a side of my career that is unrelated to the anti-vaccine movement so I can maintain good social connections with other self-advocates with autism. However, not ALL self-advocates share this belief. Thus, I have written this for two reasons: first, to show parents who feel that their children with autism have suffered a vaccine injury that not ALL adults with autism are against their beliefs, and second, to show how, through the reasoning and thought processes that most people with autism go through, that it is very plausible for a person with autism to develop negative beliefs towards immunizations.

It’s the 1990s. I am living in a suburb of Chicago, Illinois, where I currently live today. I have moved there from New York City in 1992. My family moved there in hopes of a better life for me—better services and better awareness, since they could not find such things in New York City at the time, even though, at the time, the state of New York was said to have the highest population of children with autism in the United States.

Traumatizing vacccination

One day, my parents tell me that I’m going to have to get my immunization shot. They tell me I have to get into the car. I hated car trips at the time. Riding in a car made me sick—suffering from extreme carsickness, I would suffer from a migraine headache almost every time I was in a car. I beg my parents not to make me go, but they don’t give me that choice. I also hated shots. They hurt, and were very painful. I could feel the sharp pain of the needle as if I had been stabbed by a sword.

I spend the entire car trip in terror of what’s going to happen to me. I walk with my mother into the clinic, forced to enter there in fear. Finally, it’s time for me to get my shot. I’m told by the person administering the shot that I’m going to receive two shots, and to sit still. I do so, waiting for it to be over. I look away to ease the pain. The first shot is administered. It’s painful as I feel the needle stabbing my skin, but it’s over quickly. I’m then notified that the second shot is going to be administered. Thinking that it’s going to be over quickly, I brace myself for the second shot.

Unfortunately, unlike the first shot, this shot is much more painful. The moment the shot is administered, a pain unlike any other sends a shockwave throughout my entire body. Words cannot express the suffering I am going through. I feel as if I have just been attacked by a force field, or have been stabbed by a knife that has circulated through my entire body. It is as if I have been bruised, but the feeling of the bruise has circulated throughout my entire system. Either way, it is so painful that I immediately start crying. I am then told by the nurse that this shot is extremely painful to all children, that every child starts to cry after this shot is administered. I am promptly given a bandage to heal from my vaccine wound, and head home to recover from this trauma.

Raggedy Ann became a symbol of anti-vaccine sentiment after her creator’s daughter died from a reaction to an unauthorized smallpox vaccination.

Before I leave, however, I must wait for my sister to be vaccinated. Looking around, I see a little girl getting vaccinated. She, too, accepts the first shot easily. Yet when the second shot is given, she too starts to sob in tears. I’ll never forget looking around, as a mere child, seeing so many children in tears like myself after being administered this painful shot, and wondering why adults in power had decided to force so many young children to be subject to such cruelty.

I did not know I was autistic at the time. But I knew that I was different. I lived in a world where adults in my life were routinely, in my eyes, cruel and intolerant to me. I felt as if that was the reality of childhood. I grew up assuming that adults naturally were there to hurt and torture children. Yet somehow, I had less tolerance for this torture that adults administered to children. I was a very angry child with autism. I grew up resentful of adults in my life, who seemed to me to enjoy torturing children any time they could, forcing children to do whatever they seemed against their will.

Years passed. I was forced to receive more shots by my parents, resenting each one more and more as I am subject to the pain of having a needle stuck in me. Eventually, I grew to accept that this is just one more thing that adults do in order to contribute to the suffering of children.

The angry child

One of my heroes growing up was the children’s author Roald Dahl. He wrote these amazing stories about these evil adult villains, whether they were witches, aunts, or school principals, and portrayed strong children who fought against the oppressive adults in their lives. I felt as if the adults in my life were like those tyrannical oppressors in his stories, and that Roald Dahl spoke for the anger of children like myself. I saw in him a kindred spirit—an adult who was willing to teach people about the cruelty adults inflict on children, and thanked him profusely for doing so.

I later realized that Dahl himself was an angry child, and that he, in fact, had written those stories to teach awareness about the anger that children feel towards adults. In fact, he felt what I had perceived in childhood—that children and adults existed in “endless warfare between each other”—and that the way children saw the world needed to be understood.

Accepting this reality of childhood, I do not complain when, in 1999 and 2000, at the age of eleven, I am required to get one more series of shots—the Hepatitis B shots, which was required at that age at the time in the state of Illinois (today, they require this shot at birth). I also was bullied and judged by my peers at the time and feared that if I did not get this shot I would be bullied by my peers for doing so. My parents had started to feel some instinctive skepticism about vaccinations, but still had not read anything about the possibility that autism could be caused or worsened by vaccine injury. That would all change a year later.

After finishing the fifth grade, I contract a severe chronic stomach illness, which results in a massive digestive and autoimmune collapse, which would subsequently result in an inability to digest food normally for nearly ten months. During the height of my illness, I am near the point of death, and enter starvation mode. My mother, struggling to find a remedy for her son, subscribes to an email-based autism awareness newsletter titled FEAT towards the end of the year 2000.

My parents first hear the idea that vaccines may be a cause of autism

It is through reading this newsletter that my parents learn about the anti-vaccine movement, the emerging theory that vaccine injuries can cause stomach issues found in autism, as well as the story of Dr. Andrew Wakefield—whose support for the idea that side effects from the triple-MMR vaccination could produce symptoms of autism, at that time, had sparked the growing controversy which would eventually lead to Dr. Wakefield losing his medical license, and being forced to relocate from the United Kingdom to the United States.

My parents initially started to read about the vaccine controversy out of desperation that she would find a remedy for her son, who was near death at the time. But in the process, she introduced herself, and me, to the vaccine controversy. And I’ll never forget the day when I am told by my parents about the vaccine injury theory. They tell me that my autism, and the rising number of kids with autism, could be the product of vaccine injury. I am shocked and horrified at the thought; yet, ironically, it makes sense to me.

A sense of anger rushes through my body as well. I still remember just how angry I felt having to receive those vaccinations as a child. And I remember forcing myself less than a year ago to receive two more vaccinations in the fifth grade out of fear that I would be bullied or judged by my peers for not being vaccinated. Now, I’m finding out that I was forced against my will to be poisoned, and that all of those children, without any say in the matter—were forced to have potential poisons injected into their bodies, even though so many of them begged in tears that they’d rather do anything than be vaccinated.

Wow, I thought. So all that time I was forced to be vaccinated as a child, people were forcing me to potentially be poisoned. That pain, and anguish wasn’t to protect me from disease, it was to possibly poison me. And I felt resentment that I had been forced to endure that pain and anguish for something potentially toxic to my body as a person with autism.

Eventually, my anger settled, and a biomedical intervention resulted in my recovery and survival from my digestive and autoimmune collapse, and I regained my ability to digest solid food in the spring of 2001. But as I matured, I would often look back at what I saw in vaccine clinics as a child. I remember watching young children and their anger that their parents made them receive these shots. The fear and frustration that these children felt, many of whom were terrified of shots and needles. The sobbing of these children during that one vaccination series where one was painless and the other hurt.

Children may understand more than we give them credit for

And alongside this, I remember observing the nurses, doctors, and parents who undermined what these children were feeling, trying to reassure them that they didn’t have to worry about having a needle injected in them, that the needles and shots were safe, that they were just scared unreasonably, and that the shots would be done in less than a minute. To them, it was just a fear of the physical needle and the shot—not the contents of the needle and the shot.

They assumed that all of those children were just scared of the pain involved in receiving the shot, or the idea of a needle being stuck into their bodies—not the contents that were being injected into them.

And it dawned on me. What if there was more to the cries of these children who begged the adults around them not to vaccinate them? What if the fear, the anguish, and the frustration that these children felt wasn’t just about the shot or the needle, or the pain of having a needle stuck into your skin? What if . . . these children instinctively knew that the doctors were poisoning them, and their resistance, as futile as it might have been, was because they knew somehow, or sensed, that the vaccinations they were going to receive were toxic? What if they knew, on some level, that they were being poisoned? We do know that children can perceive and sense things adults aren’t always able to understand. And I have concluded that possibly . . . that fear that every child has when being vaccinated is not just because of a fear of a needle piercing their skin. It could be fear of what’s inside the needle as well.

Now that I am a fully grown young adult with autism, I do have the wisdom to know that most adults are not intentionally trying to abuse or hurt children. But I do realize that many adults often unintentionally put children with autism in painful situations, not because they are malicious, but because they mean well. And I have never forgotten what it felt like to be a frustrated, angry child. I’ll bet even Roald Dahl, my idol of childhood, realized this as an adult as well, even though he still felt it was important to teach audiences how children perceived adults in his books.

Children live in a world where they have little control over their lives. Adults, such as parents and teachers, routinely tell them that they have to listen to them, that they know better, and that children aren’t entitled to make their own decisions. They are told that they must be obedient and compliant to the adults around them. They are often disciplined for speaking their mind, or speaking up for themselves. This means that, if adults force them to receive poisons, children have no choice but to receive those poisons. Gail Carson Levine, in her classic children’s book Ella Enchanted (a book of the fantasy genre), demonstrates this principle of childhood to a logical extreme. In this book, a girl named Ella has a spell cast on her as an infant that forces her to be obedient to anyone around her. As Ella matures and learns about the spell she is under, she states in the book, “If someone were to ask me to chop off my head, I would have to do it.” Obviously, no parent or adult would ask their child to do something like that. But the principle still remains.

This is why I support the anti-vaccine movement and what it stands for. Not because I believe in a “cure” for autism, but because this movement speaks up for the children who are powerless to protest whether or not they will be vaccinated. It is willing to listen to their voices. Their pleas not to be vaccinated, and to be spared the poisons in our vaccinations.

Adults’ responsibility to make sure children are not put in harm’s way

And it aspires to remind adults of this basic fact—since adults put children in a world where they are unable to control much of their lives, and must obey them—that it is their responsibility to ensure that they are not requiring children to put themselves in harm’s way. As adults, we have a duty to make sure that the commands we ask of children do not put them in danger. Children are programmed in our society to hurt themselves if asked to by an authority figure. And if adults in our society are going to force children to receive vaccinations for immunization, then it is our responsibility to make sure that these vaccinations do just that—immunize our children—rather than injecting poisons into them.

It also shows respect for the parents who might feel guilty that they poisoned their child. And I agree with them—don’t blame yourself for what you might have done. You didn’t know at the time. You were only doing what people you trusted told you to do. My great-grandmother once told my mother (her granddaughter), “You make decisions based on the knowledge you have at the time you made them.” And remember that you probably made that decision because doctors and others that you trusted as authority figures told you to vaccinate. You were, ironically, in the same situation your children are in daily—being unable to protest against authority figures that you thought had your best interest.

You lacked the knowledge that vaccines might be toxic, and your doctors told you to vaccinate and to listen to them because you “lacked their medical knowledge.” Likewise, children are put in a world where they must passively listen to adult authority figures because of our societal belief that they “lack the knowledge” to make proper decisions for themselves.

And here’s what I will tell you—learn from that experience. Realize that the way you felt is how your child might be feeling daily. Just like your doctor told you that you had to vaccinate because you “didn’t know better” and “didn’t know how to make decisions about your child’s health” because you didn’t have a medical degree, your child lives in a world where they’re told they can’t make their own decisions because they “don’t know better” and they “don’t know how to make their own decisions” about themselves because they are children.

You love your children more than anyone. No one loves a child more than their parents. Don’t use that love to feel despair—use it to help your child become the unique person he is entitled to grow up and become.

The controversial idea of “cure”

Finally, although a large number of people resent the anti-vaccine movement on the grounds that it supports a “cure” for autism, I personally do not share this belief. My experience within this movement has led me to conclude that, contrary to the notion that this movement is looking for “cures” for autism that will dehumanize people with autism, and shows disrespect for them as unique individuals, that many of these “cures” that are sought after are for medical symptoms and issues that people with autism commonly face, such as epileptic seizures, immune system impairments, digestive struggles, and impaired thyroid functioning.

And although I personally do not support the people trying to find a “cure” for autism as a whole (and do share the notions of many adults with autism that people with autism should have the right to be themselves), I do wholeheartedly support the efforts of people who seek to find “cures” for the medical issues commonly found alongside autism.

All of the conditions mentioned above are major medical issues, and in my case, can be potentially life-threatening. But it would be a mistake to assume that looking for “cures” for the medical issues that people with autism commonly live with is the same thing as looking for a “cure” for autism as a whole. Autism consists of many symptoms, more than just medical issues, and cures for medical issues are for just that—medical issues. They’re not remedies to dehumanize people with autism, they’re remedies to help them function better physically, and improve their quality of life. And everyone’s quality of life improves when they are feeling better physically. I’ll bet very few people with autism enjoy living with constant digestive issues and frequent illnesses due to immune impairments.

I shall conclude with the following. Although many people have interpreted many ideas and messages from the anti-vaccine movement, I have interpreted the following message I have heard from this movement and community, which I shall end this post with, and what I personally believe as well: As parents, you are given a great amount of authority to govern your child’s lives. Your love compels you to ensure that you will try to help your child become the best person he can be as he matures. Use your authority to protect your child from danger. Listen to your child when he resists something you ask of him, as he might be protecting himself from dangers you might not be aware of.

And if you must force your child to do something he refuses to, remember your own childhood. You were once a child too. Remember how you felt when you had to do things you disliked because parents or teachers asked you to. Regardless of whether or not what you are asking is essential (and it sometimes definitely will be), do not expect your child to enjoy or like doing something that you disliked back when you were a child.

Governments have the responsibility of making sure that if they are going to mandate that children receive immunizations, that the immunizations they are receiving are free from toxins and poisons. In one sense, many of us are not “anti-vaccine”—we just want vaccines to be non-toxic, and poison-free. But until that time comes, parents’ decisions need to be respected regarding whether or not their children should be vaccinated. Ultimately, the reason why we live in a world where parents are given authority over their children is because we acknowledge, for the most part, that they know best regarding what’s in the best interest of their children. Whether or not a child should be vaccinated should be the choice of the parents that love them and know them well, not state and federal governments.

And here’s one of my own personal beliefs: One mistake that the anti-vaccine movement often makes is by claiming that all cases of autism can be attributed to poisoning by toxins due to vaccine injury or other environmental exposures. This has led many people to oppose our movement and what we stand for. However, I have come to the conclusion that vaccine injury does not cause all cases of autism. I do believe that many observations have been made (by parents and others) demonstrating that children have developed symptoms of autism after vaccinations (and high levels of toxins, such as heavy metals, have been found in such children after being tested for them), and that these observations constitute sufficient data to conclude that some causes of autism can be attributed to vaccine injury. This does not mean, however, that ALL causes of autism can be attributed to vaccine injury. Some people develop autism independently of side effects from vaccinations. Likewise, not all children who are vaccinated develop autism as well. In the end, I wish every parent reading this the best in their efforts raising their children with autism, regardless of whether or not they were injured by a vaccination.

~ James Williams

For more by James Williams, click here.


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7 Responses to The Vaccine Controversy: A Personal Perspective from a Self-Advocate with Autism

  1. Aimee Doyle says:

    James – enjoyed your perspective. I see that you are in favor of treating medical issues often associated with autism, such as epilepsy and GI issues.

    I can see that you’re not in favor of a cure for autism. However, you don’t mention issues of aggression, self-injury, destructive self-stimulatory behavior, wandering, or profound intellectual disability. Also, there is a sizeable percentage of individuals with autism who are non-verbal – and non-verbal in a way that no current form of augmented communication can help. Why not a cure for these individuals who are so significantly impaired?

    I have no problem with high-functioning, articulate autistic adults who don’t want a cure for themselves. But for those who need life long care and support, why not?

  2. Piper Martin says:

    Thank you for sharing this perspective. I think children are perfectly aware and capable ~ maybe this idea will catch on!

  3. christine says:

    Oh I forgot something in my previous reply!

    James; your last paragraph was 100% on point & you said it beautifully. The concept that vaccine’s are the ONLY cause of Autism is as flawed as the concept that vaccine’s are NEVER the cause of Autism.

    I personally believe that Autism occurs after a multi-level assault on the blood-brain barrier by bacterial/viral/environmental agents in individuals predisposed by genetics..

    Maybe, these temporary or sometimes permanent “holes” in the barrier are present during the child’s next immunizations & the brain is exposed to the full onslaught of toxins.

    My research has led me to wonder about either the Pertussis or Polio vaccine as being the precursor agent as they have both been associated with elevated bilirubin levels & bilirubin is capable of damaging the blood brain barrier.

    Some would be more susceptible to this dependent on genetics. But I am not a doctor or a research scientist, these are just my … thoughts. Either way; totally agree with you on the fact that the anti-vaxx argument is weakened by the “all or nothing” stance, just as the pro-vaxx argument is also..

  4. christine says:

    Oh gosh; you sound like me (from the past), James!

    I’m an autistic 49 year old female & I remember saying my prayers every night as a child: “Please, God; take me home before I turn into one of them (adults).” I decided that I should leave before I turned 11, in order to avoid any complicating teenage influences.

    In my heart, I knew I was doomed, that I would actually grow up here, because I knew I came here for a reason. I hated adults. I blamed my parents for everything. As a teen I aligned myself with dangerous & rebellious influences as a way of asserting: “I will NOT become one of YOU!”

    What I didn’t (at the time) know:

    My dad was USAF & I was born overseas (Japan). I had been an unusually detached & sick infant & had surgery at 18 months old (adenoidectomy & tubes). While preparing to return to the US when I was 3, my parents were informed there had been a “problem”:

    My Measles titer, despite fully vaccinated, was not adequate for my entry into the U.S. So I was re-vaccinated … and my titer remained unaffected. So I was re-vaccinated; again.

    Finally after being triple-dosed, they were allowed to travel with me back to the U.S.

    I didn’t know; that my parents had been highly concerned when I, at the age of 2, would crawl (I didn’t walk until after the age of 2) over to steal my father’s newspaper & “stare” at it..

    I didn’t know; that babies don’t usually know how to read before they could walk. I didn’t know; when I started being pulled out of 2nd grade class, that I was being tested for suspected “mental retardation”.

    I didn’t know; that when I was declared “retarded” (nobody knew about “Autism” then) that my mom threw a fit at my school, demanding that I be re-tested with a different test. Or that the test revealed that I was reading at the level of a HS graduate & the school said “Well, obviously she’s not retarded but there is SOMETHING is wrong with her!” (Now known as Hyperlexia, almost 100% associated with Autism, possible savant ability)

    I didn’t know that in the early 1980’s, when my mother was using the word “Autistic”, that she had to have done massive amounts of pre-internet research to know what “Autistic” even meant. Housewives, in 1980; did not know the term “Autism”. I also didn’t know that “kids like me”, as teens, were typically locked down in institutions for behavioral problems. Not “therapeutic” institutions; Juvenile Detention … institutions.

    It wasn’t until the early 2000’s, when my dad said something to me, that I realized what it meant to parent me: an Autistic child. He said:

    “We made a lot of mistakes, your mother & I. Mistakes that we regret. You didn’t come with an instruction manual … All we know is that everything we did, we did out of love. We did it to help you because you were worth it to us. We couldn’t have lived with ourselves if we didn’t at least try.”

    Today, this memory is bittersweet; as my mother passed away on March 25. Last week, during a meeting at the funeral home, I overheard my dad talking about my mom & I heard yet something else I didn’t know:

    I always knew (thought) that my mom had her PhD in BioChem. Apparently, in the late 1980’s while in her final semester of her PhD program, my mom fatally compromised her degree while sitting in a lecture in a room full of med students.

    The professor said “No matter how severe the injury caused by the vaccine, you are not to admit that it was the vaccine that caused the injury. Not for brain-damage & not even for death.”.

    When my mom raised her hand & said “What if that were YOUR child?” (after all; it had been her’s) she was informed that she “Would never see her PhD”. So my mom’s obituary read: “Acheived her MS in BioChemistry & Immunology”.

    Believe me, James; when your mom followed medical advice & took you for those shots, she did it because she loved you. When she contacted whatever society it was that she started receiving Autism information from; she did that because she loved you too. In fact, I’d be willing to bet that your mom, like mine, made every mistake she ever made while having YOUR best intentions at heart.

    (I still don’t understand adults even though I’m 49 years old. I got older but I’m not a “grown- up”)

  5. JacobThornton says:

    I too am on the autistic spectrum and know how brave you are.

  6. That was a powerful and enlightening read and gave me a whole new perspective on how children may experience vaccination and authority in general. Thank you for sharing.

  7. nhokkanen says:

    Thanks, James, for sharing your firsthand insights on personal and public health aspects of autism. I hope your voice is joined by many more in the coming years. The world needs to hear from the young adults living with autism, whether it’s in blogs or at seminars or through a Dynavox or Avatalker.

    Several years ago I had the privilege of talking with James. Because he is older than my son, he represented possibility — his healthcare successes exemplified the positive results of team efforts by himself and his parents to find appropriate medical treatments to maximize his well-being.

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