I’m autistic/an Aspie. I’m also a doctor.
…which makes the confession that I’m about to make that much more embarrassing.
I used to be one of Those People, who was convinced that vaccines did cause autism. I was also one of Those People who was convinced that autistic people were locked in some kind of cognitive and psychological cage. (My face is beet-red with shame right now.)
My intentions were pure, I promise. I wanted to help Those People who had been “affected” and “stolen”. I wanted to help “rescue” them. (If anybody wants to flog me, you’re more than welcome to; I deserve that.)
I was sadly “vindicated” when a friend of mine had taken her son in for his vaccinations. She had given birth to him fairly late in her childbearing years, and I was concerned. Don’t do it, I thought. But I kept that to myself. This was 2009, after all, and the Vaccine Debate had heated to a scorching temperature already. The internet had become mainstream roughly 15 years prior, and by then, everybody knew they could jump on Google and find information for themselves. I figured she had researched the topic and made an informed decision. But although something nagged at me from my gut–something foreboding, an impending doom–I remained polite and silent.
I was shocked but not surprised (if that makes sense) to learn that the little newly-vaccinated boy was never the same again. I had been right. Suddenly, the little boy was crying, staring, inattention, behavior problems, and lots of other issues became the focal point of this loving family. My heart broke. My resolve to push back against “Big Pharma” and the “monster of autism” strengthened. Something had to be done. This had to be stopped. Stories like this needed to fade into history and become past-tense only. I even joined a couple of vaccine awareness/advocacy groups, dominated mostly by mothers of children who developed odd and mysterious symptoms after receiving vaccinations. (Does everybody hate me yet? I wouldn’t blame you if you did.)
Fast-forward seven years. What I hadn’t been aware of and didn’t realize, were two game-changing FunFacts:
- Surprise! I’m on the Asperger’s/autism spectrum, too! And I’ve been there since probably before birth.
- Vaccine reactions, often mistaken for autism or autistic “symptoms”, are not, in fact, likely to be autism; they’re probably something else.
I have no doubt that vaccines cause problematic issues for some children. My friend, mentioned above, is not a quack or a flake. She’s not a militant anti-medical, anti-science crusader. In fact, she’s absolutely intelligent and sensible. Her world is different now, forever changed, but she is still who she is.
And, searching the internet, one can find hundreds of stories like hers. I believe her son was diagnosed with autism, as were the children of so many of the other parents who have taken to the internet, registered domain names, built websites, and collected (albeit cherry-picked) volumes of information.
Those mothers’–and their children’s–stories need to be acknowledged and discussed, without judgment, politics, shaming, excess emotion, sensationalism, or agenda.
But I have a theory…
What these mothers are witnessing, what their children are experiencing, and what their pediatricians are diagnosing as autism is NOT, in fact, autism itself.
It’s something else.
Let’s take a (detailed) look.
If you search on the internet for “autism + vaccine” (which I would only recommend if you’re curious to find out which specific vaccines are in the hot-seat), you’ll find that the DPT (Diphtheria, Pertussis, and Tetanus; link to decent Wiki article; also called “DTP”, “DTaP”, or DTwP”) and MMR (Measles, Mumps, and Rubella; link to decent Wiki article) find themselves in the cross-haired list of Usual Suspects.
These particular vaccines aren’t angels, per se, but then, neither are the diseases they protect against.
The whole purpose of a vaccine is to induce the body to jumpstart production of immune chemical messengers called cytokines. Just like hormones are bossy little chemicals that run around telling different cells and organs what to do, cytokines are bossy little warriors that run around defending your body against Bad Things. By showing your body a prototype of what a Bad Guy looks like, your immune system figures out beforehand (i.e., before it gets exposed to said Bad Guy for real) how it’s going to launch its army against said Bad Guy, and the body can then start to coordinate its resources and perch them in their foxholes, ready and waiting.
In order to accomplish that goal most efficiently, vaccine manufacturers usually add “adjuvants”, or booster-chemicals that amplify and exaggerate the immune response. This goads the body into getting its act together, almost like a practice drill for real combat.
So far, so good.
Except that peoples’ bodies don’t always read the physiology textbooks. That was our joke in med school for someone who came into our office with symptoms or concerns that we couldn’t make sense of. It’s not as dismissive or nonchalant as it sounds; hell, my own body somehow didn’t get the memo on how it’s supposed to function; nothing about my body makes much sense.
As rosy and sound as the vaccination goal appears, a lot can go wrong. (It’s not the vaccine’s fault, per se.) In order for a vaccine to be effective, the body does have to respond properly, with its armies of cytokine troops (link to a medical journal out of Oxford). Some people’s bodies just don’t respond well, which fuels the claim that “vaccines don’t work”, or “I got vaccinated but still got sick!” Well, don’t blame the vaccine entirely; take a look at the recipient’s body, too.
And then there’s the other end of the (immunological) spectrum–sometimes it works TOO well, meaning that TOO much of a cytokine response is produced. Cytokines are responsible for pretty much everything you feel whenever you get sick – the fever, the muscle aches, the fatigue, the chills, the pain, the nausea, the malaise, the crabbiness, the mucus congestion, the sneezing, the coughing, even…intestinal food-flow reversal (yuck). Excessive or disrupted/unbalanced cytokines are also at the root of all allergic/histamine issues, most food intolerances/sensitivities, and all autoimmune disorders, such as Multiple Sclerosis, Rheumatoid Arthritis, Diabetes Type 1, Autoimmune Thyroiditis/Hashimoto’s Disease, Celiac Disease, and Pernicious Anemia, just to name a few.
Over the past few decades, hormones have gotten the most attention, neurotransmitters (the nervous system chemical messenger counterpart) have gotten increasing amounts of attention as well, but cytokines remain unknown and undiscussed. This is a bad thing, since so much of what people face these days are disruptions and imbalances in their cytokines, and they can nosedive one’s quality of life. OK, jumping off of that soapbox now; back to regularly-scheduled programming…
So anyway, cytokine responses definitely explain why vaccines can cause unpleasant symptoms, especially the fever, fatigue, nausea, malaise, redness, skin itching, and swelling that people feel on a short-term, temporary basis. Here’s a slightly-more-detailed list of cytokine-related misery:
- Low mood/Depression (research abstract)
- Social withdrawal (research abstract)
- Anxiety (study abstract)
- Insomnia (study abstract)
- Pain (study abstract)
- High fever (study abstract), and thus
- Febrile seizures (study abstract)
- Intermittent hot flashes (regardless of menopause) (study abstract)
- Brain swelling (study abstract)
- Nausea (study abstract)
- Dizziness (study abstract)
- Headache (study abstract)
Any one or combination of these can be amplified in a phenomenon known as a “cytokine storm” (link to research article abstract).
Most of the time, this is short-term/temporary. The chronic version involves the same mechanism and symptoms, but with different players. There are two broad categories of cytokines (link to research article summary). Some cytokines are first-responders (think soldiers who go to battle to deal with an immediate perceived problem), while others are the long-term reinforcements (the ones who hang out in regions long after the war is over, in the interest of “keeping the peace” and maintaining the order or boundary). Indeed, cytokine imbalances fuel the long-term symptoms of chronic disease, too (including those thought to be non-immunological in nature; link to research article summary).
Let’s look at some of the symptoms most commonly known to occur after receiving a vaccination.
Short-term symptoms are easy to find, and include (but might not be limited to):
- temporary pain
- redness, swelling, or soreness where the shot was given
- short-lived flu-like symptoms, such as:
- mild fever
- upset stomach
- vomiting
- loss of appetite
- headache
- fatigue
(Source of list above: About Kids’ Health Canada (AKHC))
I can hear some people hollering now. “What about the symptoms that arise quickly after vaccination….and stay there, without letting up??”
I hear you. Longer-term symptoms are a little harder to find; I do find a little fault with the conventional medical establishment for being as vague and zip-lipped as they often are. AKHC mentions a few, but the first symptom they list–and the most commonly “accepted/acceptable” symptom (relating to allergic reaction)–is also the least common of the long-term effects.
Nevertheless, I’ll start with their list:
- serious allergic reaction or anaphylaxis, including itching, rash, swelling around the mouth and face, trouble breathing, and low blood pressure
- seizures
- high fever
- joint pain or stiffness
- pneumonia
I had to dig a little deeper to find more; seeking a balanced view (a perspective that includes an exploration of both sides of the issue), I also visited the National Vaccine Information Center (NVIC), which does cite many of their sources, plenty of which actually lead back to correctly-interpreted medical journal articles (albeit some of them old, although even some of the older ones are still accurate).
Here’s their list (link to their page containing the list):
- Brain Inflammation/Acute Encephalopathy
- Chronic Nervous System Dysfunction
- Anaphylaxis
- Febrile Seizures
- Guillain Barre Syndrome (GBS)
- Brachial Neuritis;
- Acute and Chronic Arthritis
- Thrombocytopenia
- Smallpox, polio, measles and varicella zoster vaccine strain infection
- Death (smallpox, polio and measles vaccine)
- Shock and “unusual shock-like state”
- Protracted, inconsolable crying
- Syncope
- Deltoid Bursitis
The first two on the second list, Brain Inflammation/Acute Encephalopathy and Chronic Nervous System Dysfunction might begin to explain the armies of parents the internet-world over who describe a mysterious phenomenon currently (unfortunately) known as “regressive autism” (link to brief-but-sound Wiki article, for general background purposes).
“Regressive Autism” is characterized by:
- Precipitating psychological events were observed (in just over half the people studied)
- The mental developmental level including speech and sociability function at 5 years of age was significantly lower (than that of control subjects)
- Severe behavioral disorders such as “stereotypic behavior”,
- “Extremely hyperkinetic behavior”,
- and “Self-abusive behavior”
- Lower adaptability (such as at school)
- Higher incidence of epileptic seizures -and/or-
- Febrile convulsions
(Source: research article abstract on the clinical features of children who experienced autistic-like “setbacks” as babies)
By (stark) contrast, the official diagnostic criteria for the autism spectrum itself include (the short version, since this is well-trodden ground already):
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history:
- Deficits in social-emotional reciprocity–abnormal social approach, abnormal conversation, reduced sharing of interests, emotions or affect, etc.
- Deficits in nonverbal behaviors in interaction–abnormalities in eye contact and body language or deficits in understanding and use of gestures; to lack of facial expressions, etc.
- Deficits in developing, maintaining, and understanding relationships–difficulties adjusting behavior to suit various social contexts, with imaginative play or in making friends, or absence of interest in peers.
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:
- Stereotyped or repetitive motor movements, use of objects, or speech–echolalia, idiosyncratic phrases, etc.
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of behavior.
- Highly restricted, fixated interests that are abnormal in intensity or focus.
- Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment.
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
In addition, we, the people actually on the Asperger’s/autism spectrum, frequently report (sources vary from social media to blogs to books):
- Anxiety, often due to sensory overload or certain situations of social interaction
- Insomnia
- EDS (a genetic connective tissue disorder)
- Empathy, from normal-to-high levels
- The “mental jukebox”
- Gender fluidity and/or non-conformity, in terms of both identity and sexual orientation
- Straightforwardness, saying what we mean
- Childlike (not childish) genuineness, lack of game-playing
- Physically appear younger than we actually are
- Average-to-above-average intelligence
- High aptitude for creative and/or scientific realms
Now that the lists are all spread out on the table, I’ll try to make some sense of them… (Deep breath)…
The list involving the short-term, commonly-experienced post-vaccination symptoms is pretty straightforward. The initial cytokine spike can indeed induce these symptoms, all a part of a general immune response. The immune system is doing exactly what it’s supposed to do. No problem there.
The driving force behind the two-part list regarding the more chronic, long-term symptoms that have arisen after receiving a vaccination (“two-part list” meaning the combination of lists of symptoms from AKHC and NVIC) is a bit murkier, but I’m pretty sure that the items on that list have to do with the longer-term players of the immune system. If someone is experiencing symptoms like these, chances are pretty good that their immune system was unbalanced to begin with.
The list pertaining to the symptoms of what “they” call “regressive autism” doesn’t actually resemble autism at all. Nowhere in the diagnostic criteria for the autism spectrum are symptoms such as “self-abusive behavior”, “hyperkinetic behavior” (restlessness), or severe behavioral disorders mentioned; i.e., these symptoms do not appear in the autism spectrum diagnostic criteria. So where the hell, then, do researchers and healthcare professionals get off linking them to autism? There’s no link! Those two lists–the two-part list of longer-term vaccination symptoms and the list of diagnostic criteria for autism spectrum–have hardly anything in common.
The two-part list of chronic post-vaccination symptoms does, however, have more in common with the list of cytokine hyperactivity. They share seizures, pain, and lots of “-itis”s (indicating inflammation). Inflammation doesn’t have to be limited to the injection site; cytokines travel and circulate–and then inhabit–the entire body, so if they’re carrying pro-inflammatory messages, they can go systemic and cause low-grade, often-invisible swelling all over.
Tell me… Parents of young pre-verbal children, you know that when your child gets fuzzy or starts crying, they’re probably in some kind of pain or other discomfort (such as nausea), right? Also, when they’re tired or “zoned out” or fatigued, they might stare into space, lose previous cognitive abilities, and display other symptoms, right? (I feel you!)
Now take a look at the list of “cytokine storm” symptoms… (I’ll rewrite the list here, too):
- Low mood/Depression (research abstract)
- Social withdrawal (research abstract)
- Anxiety (study abstract)
- Insomnia (study abstract)
- Pain (study abstract)
- High fever (study abstract), and thus
- Febrile seizures (study abstract)
- Intermittent hot flashes (regardless of menopause) (study abstract)
- Brain swelling (study abstract)
- Nausea (study abstract)
- Dizziness (study abstract)
- Headache (study abstract)
Now look at the symptoms for “regressive autism”… (I’ll include that list here as well):
- Precipitating psychological events were observed (in just over half the people studied)
- The mental developmental level including speech and sociability function at 5 years of age was significantly lower (than that of control subjects)
- Severe behavioral disorders such as “stereotypic behavior”,
- “Extremely hyperkinetic behavior”,
- and “Self-abusive behavior”
- Lower adaptability (such as at school)
- Higher incidence of epileptic seizures -and/or-
- Febrile convulsions
Could a particularly severe instance of the “cytokine storm” list be what’s fueling the “regressive autism” phenomenon? Perhaps the child has a headache so intense that that’s why they’re banging their head against the wall (self-abusive behavior) or acting extra-fidgety (hyperkinetic behavior). The child may be in so much pain or nausea that they exhibit lower adaptability at school (a phenomenon which has been termed “autistic enterocolitis” – say what? Although gastrointestinal issues are common among the community, that’s more of a result of anxiety-induced low stomach acid than it is anything else; GI distress is NOT in the autism diagnostic criteria, nor is it universal across the community). The child may be experiencing brain swelling (low-level), which in adults causes symptoms described as “brain fog”, which might reduce the child’s ability to make eye contact or make them stare into space (stereotypic behaviors). Maybe they’re so dizzy that they’re preoccupied with that and thus they demonstrate verbal regression. Maybe their fever is getting so high that it’s causing the febrile seizures.
But they can’t tell you what’s going on. Since they haven’t developed adequate language or vocabulary yet, they can’t tell you that the room is spinning and thus they can’t look into your eyes. They can’t tell you that they’re so nauseated that they don’t want to be hugged or picked up or cuddled with right now.
It sucks, it really does – but that’s just the nature of small children in distress.
I won’t argue that vaccines can contribute to biochemical distress. After all, when you take a physiologically compromised child (as what happens when a mom has, say, for example, a known (or unknown) autoimmune disorder or toxic chemical excess or gut bacteria imbalance or what-have-you, which is increasingly common and nobody’s fault) with unbalanced immune function, and you inject the child with a cocktail of dead “bugs” and adjuvants designed to stimulate an immune response (not necessarily a bad thing in itself), then some children’s bodies are bound to respond in exactly that way.
It’s terrifying, and it can be tragic. But it’s not autism.
A cytokine storm is a volcano going off in the immune system, between the ages of infancy to toddlerhood. The autism spectrum is different neurological wiring, its stage set in utero and becoming more apparent in early development. The diagnostic criteria for autism do not include fever, self-abuse, self-harm, or seizures.
Rather, the reaction to vaccination is more than likely a link to Dravet Syndrome (link to good Wiki article), a little-known but probably-very-underdiagnosed/under-realized issue. This does match the symptoms of “regressive autism” and cytokine flare-up, and in people with certain previously-silent gene variations/mutations, vaccines could indeed Stir Things Up in terms of supposedly-“autistic” symptomatology. Although Dravet Syndrome is currently thought to be rare, the scientific community used to think the same about many health issues we now know are quite common (the gluten reactivity spectrum, autoimmune disorders, and even the autism spectrum, to name a few). Dravet Syndrome could be much more common than we thought, and all this time, these vaccine-reactive children were being labeled as autistic, when Dravet Syndrome would explain the phenomenon much better (link to research paper).
The lack of a link between autism and vaccines would also explain why, despite the removal of thimerosal from all vaccines in Sweden and Denmark (in 1992), and in the United States (in 2001) (link to CDC’s timeline), autism spectrum diagnoses continued to climb (read: skyrocket).
It’s not a matter of vaccine injury.
It’s not even a matter of increased incidence/prevalence. Autism is not skyrocketing; it has always been here.
It is matter of: we’re getting better and more proactive in general at evaluating, recognizing, and diagnosing autism.
Again, for the cheap seats:
- I’m truly sorry if your child has had an unexpected and serious response to a vaccine.
- I don’t care what the pediatrician or counselor/therapist/psychologist says: it’s not autism.
- To the less-informed (not a criticism or a slur), some of the signs of “regressive autism” or Dravet Syndrome may look similar to those signs exhibited by autistic children.
- But that’s more likely a cytokine storm or Dravet Syndrome–not autism.
- Autism is a different wiring, a different operating system, if you will. It’s present before birth, but doesn’t typically become noticeable until at least 18 months. Thus, there is no early screening.
- Autistic people are not generally affected by vaccines, unless they also have serious cytokine dysfunction (which goes unchecked and therefore, unnoticed/unknown) or Dravet Syndrome.
It’s important that the mechanisms behind these issues are explored fully and reported honestly, and without bias or politics. It’s important that we begin with the right terminology and a firm understanding of the fundamental information. (If we don’t have a solid grasp of definitions and physiology, and we simply toss around terms like “autism” as a catch-all, then that only muddies the research and the gathering/accumulation/evolution of the collective knowledge base, which helps no one. The “wars” will continue between parents and the scientific community, children will continue to suffer, and the genuinely autistic/Aspergian adults will only continue to be viewed as “tainted” and “damaged”, and we’ll keep getting marginalized. Nobody wins.) However, if we arm ourselves with the basic knowledge and use the terms correctly, only then can we move forward, treat and cure what needs to be treated and cured, and leave the rest of us alone and let us be different, embracing and accepting those of us running different operating systems instead of chastising or dismissing us. 🙂
Further Reading:
Thimerosal Exposure Does Not Affect Autism Rates ~ A Conversation On Autism (blog – very well-informed, analytical post)
The Autism-Vaccine Myth ~ Public Broadcasting Service (PBS): NOVA (United States)
The Importance of Vaccines ~ VaccineInformation.org
How My Daughter Taught Me That Vaccines Don’t Cause Autism ~ Voices For Vaccines (blog – also a well-written post)
Vaccines and Autism: A Tale of Shifting Hypotheses ~ Clinical Infectious Diseases (an Oxford Journal property)
Immunization Schedules ~ US Centers for Disease Control (CDC)
Into the Eye of the Cytokine Storm ~ Microbiology and Molecular Biology Reviews (medical journal)
Vaccine Reactions ~ Vaccine-Safety-Training.org (how to navigate the statistics)
Vaccine Information Sheets ~ World Health Organization (has downloadable sheets on each common individual vaccine)
Vaccination and the Onset of Dravet Syndrome ~ Epilepsy Currents (medical journal published by the American Epilepsy Society)
Timeline: Thimerosal and Vaccines 1999-2010 ~ US CDC
A Broken Trust: Lessons from the Vaccine-Autism Wars ~ Proceedings from the Library of Science (PLOS) (medical journal)
Inflammation ~ Oregon State University, Linus Pauling Institute
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I’ve been on both sides of the vaccine/autism debate myself. When I was younger I claimed that whether or not vaccines caused autism, if there was any question we shouldn’t be giving vaccines and even countered some pro-vax arguments with “I’d rather be dead [due to a deadly disease] than have autism.” And yes, that is exactly how I felt. Having been denied my dream career I just wanted to be dead. I felt like I had nothing to live for so I’d have rather had a deadly disease (yes, I did receive the standard vaccinations as a kid).
That attitude has changed somewhat. In general I do see vaccinations as a good tool in fighting these diseases and have come to the belief that vaccines aren’t to blame for autism. That said, they are still not 100% safe (maybe 99.9% safe?) and it’s never bad to research how to make vaccines safer while retaining their efficacy. I’m also in favor of mandatory vaccination for admittance to public school (though I do not favor holding a gun to parents’ heads and saying “you WILL vaccinate your kid”). It’s a fine line balancing individual rights and herd immunity.
Admittedly I don’t know what the solution is. It’s a difficult situation and we still need to make progress.
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^^ Yes!! . I completely agree; the last few sentences especially speak to me 👏🏼👏🏼👏🏼👏🏼😊💜
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im not convinced that the link between the two is substantial; most of the evidence seems to point to the link being exaggerated or even fabricated– i would be surprised (even now) to find out somday that one really causes the other.
youve (really) done your homework, though theres one thing that i didnt notice in the text: vaccine preservatives (only in some vaccines) that contain mercury? no one can ever convince me thats safe… it should be much easier to convince me they dont lead to autism, but not that such preservatives could ever really be safe. fwiw, my “guess” is that autism is simply genetic. x-men? well obviously, isnt charles xavier one of us? 🙂 (although the unfortunate endorsement of autism speaks i admit, is a good cover…)
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Much agreed – I’m not a fan of mercury, either. Thimerosal is essentially a form of mercury, the kind I reference (but forgot to include the Mercury part–oops! 😳). Now instead of thimerosal, they’re using aluminum, which, like mercury, also has neurotoxic effects (mercury was the culprit behind the “mad hatter” phenomenon, and aluminum is being linked more strongly to certain types of dementia). And yeah, I agree that that can’t be good. Vaccines themselves have been made a lot safer these days, but there are certain gene mutations (that are surprisingly common!) that involve the immune system, the nervous system, and detoxification function (primarily in the liver) that conventional medicine really needs to start paying attention to. 😊
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Wow, what a comprehensive post.
I enjoy reading your blog, in part because I always wonder if my dad may have had Asperger’s, and if I don’t I think I might come close. Gives me a different lens with which to understand myself, and my dad.
For the most part as a parent I was pretty confident getting my kids vaccinated. There was a rotavirus vaccine that my daughter received that was pulled from the market. That made me a little more cautious.
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Thank you very much for sharing your thoughts! 😊 How freaky that must have been, at least to a certain extent, to see that vaccine pulled from the market! I totally agree, that would’ve made me take a pause to think as well. So glad all turned out well ❤️
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Really helpful explaining post
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Thank you, dear friend! 😊❤️
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I was trying to say all this stuff as far back as 2008 on an old blog and in an autism forum. I have known all this information for years because I’m 2 decades into autoimmune flares and a whole pile of health info that keeps updating almost by the year. I’m also born to a Mennonite dad and never had a measles shot, and he and his brothers, who never got immunizations in their lives, are way more autie than I ever was.
People are vicious with their beliefs. Everyone is right. I stood my ground, a bit less eloquently than your writing here, but everything you wrote was already blazing in my brain as TRUTH. I live the truth in my own body. I know the truth inside and out.
I’m about to add another truth for you to think about. I’ll start with an example.
Years ago, when my kids were young, it was fashionable to witch hunt and crucify ADHD as a serious mental illness. I sat in CHADD meetings wondering what in the world I was watching. As a person who has studied world populations in sociology and anthropology, I already knew that 10% of anything in a population is considered a necessary survival trait to a bigger whole. I argued in meetings that perhaps our hyper little kids are good for us, part of a long history of human survival. How many families do we hear die in fires because no one woke up? Sounds like they needed an insomniac, like I was raising. How many people quietly did everything Hitler told them to? Sounds like they a country full of people who ask a lot of questions. How did America get settled? My husband comes from a direct line of people who couldn’t sit still and spent their lives traveling across the territories starting towns, which included setting up local governments and trade.
I propose that autism is exactly that- good for the whole. Years ago we started recognizing that auties tend to flourish around high tech areas. Who do we have to thank for major technological changes in our world? Air conditioning, cell phones, a variety of gadgets and devices for easier living and entertainment? Not everyone can sit through puzzling all that out. It takes particular brains to problem solve to the extent that they’ll obsess, forget other things, even crave to be alone doing it.
Neurodiversity is GOOD. We need all our different brains to survive as a species. Trying to fix each others’ characteristics so that no one is born with them any more is paramount to cognitive genocide. If we don’t start teaching each other that we are all necessary and that variety is good, we will see a much more vicious condemnation than racism in our lifetimes.
I like that you’re a doctor. I love that you’re finally writing all this down the way I’m worn out from trying to say any more. I hope you are listened to. But I also hope that you continue to open your eyes and learn. Your writing is helping to change our futures.
I come from generations of auties. My dad is autistic. I am autistic. My child is autistic. Her child is autistic. I am diagnosed, my grandson is part of a doctor’s nutritional research. A lot of what I’m seeing in my daughter at the very root is that she point blank loves her son, and she’s not pushing him to be what he’s not, the polar opposite of what my mom did to me because she raised me under the bad mother stigma, which was heartbreaking because it wrecked her. It seems to me that the problem with autism is that it’s all around us, and NTs (I call them instinctuals) are just now waking up to that and freaking out.
As someone who has struggled for years with research and writing, I want to say thank you for organizing all that information into one post, and I hope it is seen around the world.
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Yeah!!! Thank you so much for sharing your story, girl! I love to hear from people with different perspectives (such as growing up in the Mennonite culture). No doubt about it, autism exists no matter whether one has been vaccinated or not. I’ve heard several references being made to the Amish culture (as one example) and how they don’t vaccinate, and also don’t have autism, and I have to wonder two things:
1) Their genetic makeup could very well explain the low prevalence of autism in their community, not their lack of vaccination.
2) Maybe they actually DO have more instances of autism in their community, but due to the lack of connection with mainstream society, those cases are not being discovered/assessed/discussed/realized. Maybe there are actually Aspies/auties among their population, too, that may be unknown.
Autism/Asperger’s traits have been around a lot longer than vaccines, and continue to rise even in areas with low vaccination rates. Nobody in the anti-vaccine community wants to discuss that, or maybe they’re actually unaware. (I fell into the latter category back when I subscribed to that side of the debate; I had no idea.)
I’m so sorry that you went through what you did, with your mom succumbing to the stigma and attitudes of the prevailing view on autism, and what it did to you. That’s a tough road to walk, a tough situation to endure for so long, and a tough history to overcome. I admire your strength and I admire who you turned out to be! ❤️
I hope that parents (or anyone else) who is/are afraid of vaccination sees your comment and begins to understand the truth. There are certainly reasons why someone might want to proceed with caution when it comes to vaccines, but rest assured, autism is *not* one of them 😊
Thank you very much, again! 👏🏼
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Thank you for this post! Both for:
– the comprehensive science; AND
– for being so honest about your former perspective and beliefs.
I’ve never been anti-vaxx.
HOWEVER, I will hold my hands up and admit that I used to be horrified at the idea of autism, because I didn’t understand it. Shock! horror! – I even questioned whether my (highly intelligent, imaginative, creative, compassionate, kind, sociable, hugely funny) daughter had any inner life at all, because so much of her early speech was echolalia. If she couldn’t express herself in her own words, was there anything there? (Yeah. I know. Please understand I don’t think this now).
And – lo and behold! – both she and I are now formally-diagnosed autistic. And it’s so horrifying to think that the prevailing image of autism is so negative that even people like me – autistic people like me – don’t recognise it until we start delving more deeply and reading more widely. The stories in the mainstream need to be more diverse.
We need to be able to SEE OURSELVES in the media representations, and the media needs to LISTEN to us.
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Wow!! Thank you so much for writing this! Yep, I held a similar view of autism before realizing that I am – in fact, I had wanted to become one of those Defeat Autism Now (DAN) doctors. What held me back was primarily my knowledge that autism, as it’s portrayed in the scientific community and mainstream media, was very complex and I knew I would need to devote a chunk of time to studying it–not easy when you’re new in practice, trying to get off the ground, and having to wear many different hats until you can afford to hire other people to help you out. 😊
Luckily, I discovered my own spot on the spectrum before I went ahead with that! 👏🏼
Which brings what you said to the forefront: so many adults on the spectrum are just now realizing, late in life, that they’re Aspergian/autistic! And you’re spot-on about why – the way in which autism is portrayed in the media and viewed by scientists and healthcare providers is WAY off base. To the point where when I read the diagnostic criteria for the first time, I actually didn’t recognize how so many of my idiosyncrasies matched/fit them! 😱 Only by reading (a lot) into them and discovering blogs written by actually-autistic adults did I begin to recognize myself in those criteria, and as it turns out, I meet/exceed them all! 😂
I completely agree – OUR voices are missing from the conversation. OUR experiences are missing from the equation. Those of us who are diagnosed are routinely ignored and erased from the limelight, hidden from view.
I love your comment, and I think you have the outline of a fantastically awesome blog post brewing! 👏🏼👏🏼👏🏼😘😘💞💞
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