Common Sense about Autism & Vaccines

***Edited – the most basic premise of this article is that autism is NOT a disease, disorder, or condition. It is a #neurodivergence. A natural part of human diversity. It is not something to be ‘cured’, ‘treated’, therapies or pathologized.

So the very idea of causation or not immunizing in order to ‘avoid’ your child becoming autistic is offensive and absurd. 

I appreciate and accept my own #neurodivergent brain. But even more I am fascinated by and adore PanKwake’s remarkable, deep, and #BeautifullyAutisticBrain. If I believed that vaccinations ’caused’ autism that would be an argument in their favor in my book.

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I have been meaning to write this blog for some time now. Right down to asking permission from my adult son Sunshine. But other things kept coming up. Then I saw this headline from an #ActuallyAutistic YouTuber…

Kids with autism -and their siblings – are less likely to be vaccinated

And I knew it was time for me to come clean. Let me begin by saying…

Autism is genetic.

Research clearly shows this. Might there also be environmental factors that ‘trigger’ the gene such as with certain forms of cancers? The research is mixed and there is not enough understanding of it to say for certain. Have immunizations been proven to be one of those environmental factors? No. Although there have been a couple of high-profile pay outs from the vaccine fund…without clearly accepting ‘blame’ of course. But then again those pay out never do. BUT autism aside…

Vaccines are NOT ‘safe’.

While the percentage may seem low, dozens of children die from them each year. Hundreds more are left with other neurological issues, including seizures, paralysis and/or lack of sensation at the injection site, and at the extreme profound intellectual and neurological disabilities usually as the result from high, intractable fevers following immunizations. And yes, some of these do have remarkable overlap with autism.

These are facts. As someone who does not have children perhaps that YouTuber has not seen the inserts that come with them. It is pages and pages long for a reason.

Are you aware that the US federal government pays out millions upon millions of tax payer $$$ each year to families? That there is a special tracking system for adverse events as they are called? Or that the system is designed to under-report those reactions and deny legitimate claims?

While there has been little legitimate research (i.e. impartial and not funded by the drug manufacturers), what little there has been suggests that those at greatest risks of these adverse events are those with either a pre-existing neurological condition…yes, such as autism…or a strong family history of such. Thus, there is a good reason and legitimate/logical argument why autistic children and their siblings should not necessarily be immunized.

If it seems like I know, it is because I do. Not with my beautifully #HappilyAutistic PanKwake but with my now adult Sunshine…and his biological siblings. I had waited until Sunshine was three years old to even begin his immunizations because both of his full siblings had had such trouble with them including intractable fevers greater than 105 degrees and hard painful knots at the injection site.

For the first couple of days everything was great. In fact, it was his older sister Precious that had me worried. She had a knot the size of an egg at the injection site. She cried of constant pain and drug that leg as it was virtually paralyzed. But Sunshine was perfectly fine. I thought that I dodged a bullet this time, that by delaying the immunizations I had accomplished my goal.

Then on the morning of the 3rd day, he spiked a fever. From nothing to burning hot in less than 10 minutes. This was during my marriage to the ‘preacher’. In fact, we were having church in our home that morning. I was busy cleaning, cooking, and getting ready for people to arrive when Sunshine came into the kitchen saying he did not feel well. He had been playing just moment before but my hand literally burned when I touched his little forehead.

I scoped him up, stripped off his onesie, and put him in a tub of tepid water to bring the fever down as quickly as I could. I was calling for the preacher when I heard a thud and noticed movement out of the corner of my eye. I turned to see Sunshine lying face up in the tub…seizing.

I jerked him out…due to risk of drowning. I screamed and ran with his naked, rigid, and jerking little body for the phone. I called 9-1-1. All the time I watched to see if he was breathing…barely.

We lived in rural Texas at the northern most end of our county. I was told that it would take an ambulance 45 minutes to arrive and that they would then take my child back to the hospital in the south of our county. Yet, we were just ten to fifteen minutes from another hospital across the county line.

So the preacher and I left three other children seven years old and younger alone…knowing that our friends from the church would be arriving in a few minutes. With the preacher driving our beat-up old Toyota truck full-out with emergency blinkers on and me holding the body of our son who was still jerking with the seizure, we made a mad dash for the county line and that other hospital.

Sunshine was ghostly white. His little body still burning up in my arms. His lips blue. He was breathing only one or two raspy gasps per minute.

Even now I am not ashamed to say…I prayed. Like never before…or since. I faced a mother’s greatest fear…the death of my child.

We raced through the door of that emergency room with my son in my arms, wrapped only in that towel. That was a tiny hospital but they went on full alert. They took Sunshine from me. We had every doctor and nurse in ER crammed behind that flimsy curtain. They sent me to ‘register’ him…probably to get me out of the way as I was seriously loosing it by then. By the time I came back, Sunshine had stopped seizing, was awake and screaming.

If that were not bad enough…our ordeal had just begun. While he never again had a tonic-clonic/grand mal seizure, for the next four years Sunshine continued to have the severe myoclonic jerking in his sleep. Every bit as bad…perhaps even worse that PanKwake’s. He also had absence seizures. He would blank out, just staring, while picking at his shirt sleeves with his mouth. There were some days his sleeve stayed wet…all the way to his shoulder.

But that was not all. Sunshine lost developmental milestones too. He had been fully potty trained, but began to wet the bed at night…and occasionally soil himself during the day, especially during the worst of those absence events. His speech also became slurred, less easily understood.

The next couple of years became a battle with doctors. EEGs…medications that never worked. Including one that made him so uncontrollable that he put his little hand right through a window…and ran into the road naked. In the end with him…we ‘foolishly’ withdrew all medications…and ‘trusted god’. I say foolish because in the end the outcome was the same as with PanKwake…they outgrew the seizures.

Or so I thought. After university, Sunshine lived with us for a bit while he got the necessary credentials to teach in China. I learned only then that even now he occasionally experiences what is known as ‘nocturnal paralysis’. In other words, he awakes during sleep…but is completely unable to move or speak for a time. He describes it as terrifying.

Mind you…Sunshine is now married and pursuing a PhD in engineering…at Cambridge. So clearly the vaccines did not diminish his mental capacity. In fact, he was the only one of his full biological siblings not to be dyslexic. He learned to read at four…before either of them. Simply by sitting quietly and coloring at the dining table while the preacher taught his older brother and sister.

But still…it was a life-changing and eye-opening experience for our family.

Some other things I think you should think about…

• VAERS – the Vaccine Adverse Event Reporting System is flawed. It is ‘rigged’ to make it minimize the number of ‘legitimate’ reactions. In our case, my daughter’s injection site swelling, pain, and temporary paralysis was ‘registered’. But Sunshine’s more life-threatening and longer term effects were denied. Why? Because that fever and seizure occurred fifteen to thirty minutes outside of their seventy-two hour time limit.
• The National Vaccine  Injury Compensation Program (“Vaccine Program”) as Part 2 of the National Childhood Vaccine Injury Act of 1986 (“Vaccine Act”).  The Vaccine Act became effective October 1, 1988. It establishes the Vaccine Program as a no-fault compensation program whereby petitions for monetary compensation may be brought by or on behalf of persons allegedly suffering injury or death as a result of the administration of certain compulsory childhood vaccines. Congress intended that the Vaccine Program provide individuals a swift, flexible, and less adversarial alternative to the often costly and lengthy civil arena of traditional tort litigation. (https://www.uscfc.uscourts.gov/vaccine-program-readmore) Did you catch that no fault bit?
• Herd theory of immunity – If vaccines work, can you explain to me how the less than 10% of children who are NOT immunized put the 90% of those who are at risk? Does that make logical sense to anyone?

So what is a parent to do? After all, I did title this…Common Sense about Autism & Vaccines.

I believe the answer is to be found in two established principles…

The best interest of the CHILD – Going back to my favorite the United Nations Convention on the Rights of the Child…

Article 3 (best interests of the child)
The best interests of the child must be a top priority in all decisions and actions that affect children.

And the other principle is…FULLY informed consent. That means YOU…the parent…need to do your research and read up on things. Not just listen as the doctor/nurse minimizes those risks…telling you how ‘rare’ they are.

Because I promise you those doctors and nurses are NOT going to be there when your child has a seizures, develops paralysis on one-side of the body, experiences profound developmental delays, or dies. The drug companies and government already know and accept these things as ‘collateral damage’…’acceptable risks’.

YOU are the one left holding your child during seizures. You are the one changing diapers on a four year-old (and sometimes a twenty-four…thirty-four year old). You are the one that may be standing by the side of that hole in the ground as they lower a box containing the husk that was once your vibrant child into the ground.

YOU alone are ultimately responsible for this…and all parenting decision. Not your doctor. Not Big Brother.

So make damned sure you know what your child’s risks really are. Is he in a ‘high risk’ group…and yes, the autistic as well as their siblings are in that group. As are those with immuno-suppression. As are those with a strong family history of other neurological conditions…such as epilepsy and even depression.

But no one told me that when I signed the papers to vaccinate my children…despite my family history of epilepsy and their paternal family’s of depression.

So what are your options? Especially in these increasingly challenging days of Big Brother…compulsory immunization schedules.

1. Delay – As I did with Sunshine. In your research, look closely at how that schedule has changed over the years. Does a newborn baby really need its first vaccine within days of birth?
2. Space them out more – This one just makes common sense. If parents are told to introduce solid foods one at a time, allowing days or weeks between them, in order to identify any allergies or intolerances…what logical sense does it make to stick three, four, or six different vaccines into that same child’s body in the space of a moment?
3. Always know your facts – Have the lot number and manufacturer of all drugs written down somewhere safe. Cause I promise you that it won’t be easy to get that information after the fact.
4. Don’t be bullied – If the doctor or nurse refuses to answer your questions, get up and leave. Take the literature with you, telling them that you need more time to make a fully informed decision. Remind them that all ‘patients’ have the right to do so.
5. And yes, ultimately, you have the right to REFUSE them – Especially if you believe your child falls into a ‘high risk’ category…LIKE autism.
6. BUT if you do…then you should be prepared to accept full responsibility for that decision…and those risks too. Measles can kill. Even with the improved medicines we now have available it and polio in particular are deadly diseases. So if there is an outbreak in your area…are you prepared to quarantine your family…or immunize at that time? You can’t have it both ways, folks.

For us, we utilized a combination of those with mixed results. JalerDasBirds’ pediatrician in American recognized and VALIDATED my concerns. Like Sunshine, he was two or three before he began receiving them. Even then, he received only one or two at a time and spaced out by weeks. Once we established that he was not sensitive to any individual one, we did begin to combine them…slowly. But by the time he entered kindergarten he was fully immunized.

I battled much more to get those same allowances for PanKwake. I felt bullied by the less-educated and much less-informed health visitors…but that is another failing of the UK system and another blog. PanKwake is ‘mostly’ immunized. I think she may be requiring a couple of boosters…and the new HPV one.

BUT I do not consider that MY decision anymore. At twelve, PanKwake is old enough to make her own FULLY-Informed decisions. And given 1) her dislike of doctors and 2) her love of conspiracy theories, I think I have a pretty good idea which way that might go.

Ultimately, what I want EVERYONE to take from our story and this blog is…

Vaccines are safe for some, maybe even most people. My adopted son, the artist never had any reaction to even one of them.

They are NOT safe for everyone. And sadly, we do not fully understand who is most at risk. In a good part because the government and drug companies have decided that ‘some’ deaths and injuries are ‘acceptable’. As a result of the flaws in the VAERS system, we do not have reliable data on what makes someone ‘high risk’. Though we do have vague ones…including autism.

So before you get all up in arms at sensationalistic headlines and write blogs about the shame of parents not immunizing their #ActuallyAutistic children…do your research. Recognize that the risks are appreciably higher for the autistic. And then weigh those choices.

Even if you do not have children or autistic ones, use some empathy to understand that while those adverse events are ‘rare’, they don’t seem that way to the parent lowering that coffin into the ground. Ask yourself…are #ActuallyAutistic lives valued the same by VAERS and that National Vaccine Injury Compensation Program?

Until you have held your child in your arms and made that mad dash for the hospital across the county line…you have no right to judge me or anyone else.