An Absence

CW: Conspiracies. Illness in Children

Me and my spouse have been going through it recently. Life’s been extremely rough and has required so much more emotional and physical energy to navigate. My autistic child is having an increase in unsafe behavior and that has just made day to day life extremely difficulty. (Fun fact, did you know that elopement and worries about a child’s physical safety is a common concern in families with ASD children.)¹ Life is an odd teacher of sorts, and in many ways I’ve recently felt like I was just humbled instantly because I thought I had a grasp on what my ASD child’s behavior would look like or what epilepsy was. Life’s thrown curveballs. And it’s truly been rough.

My son rapidly started having symptoms that were quickly identified as absence seizures. We got him seen by a neurologist to confirm it. And, yes, he does have epilepsy something we always knew was a possibility. (There is a strong maternal risk for passing on epilepsy to your biological children). But it’s a very hard thing to have to realize in real time. Especially when the realization hits that this will be with him his whole life.

Me and my spouse have totally had to reevaluate our plans for literally every part of our future. We had been considering a move…now due to our children needing multiple medical professionals any type of move would leave large gaps in medical care. Possibly leaving my children and spouse without needed medication. My oldest has taking years to establish with many of their specialists. And waiting lists are long for any therapy or counseling regarding ASD (Autism Spectrum Disorder) in kids.

Either due to burn out or stress about their sibling my oldest has also been having increased social difficulty. Long all day trips for fun fall activities are completely out of the question. Even just extended hikes are difficult due to their inability to self regulate their hunger, thirst, and temperature. Every kid with ASD isn’t the same but much of my child’s issues with ASD seem to focus on their inability to navigate their inner world. Body sensations are unable to be identified – hunger, feeling too hot, or thirst have to be regulated by an outside person or source. As they would never currently be able to self identify the hunger or heat as anything other than discomfort. Emotions are also hard as “easy” emotions like sadness, anger, or happiness aren’t able to be identified. The concept intellectually is understood but there is a big disconnect in recognizing their own emotions. All of that mixed together with some more general traits of ASD make navigating large group activities or even just going to the store difficult.

Almost everything needs to be accommodated in some way. Shorter trips or having multiple backup plans for a possible autistic meltdown are now a must. Limiting time in high stress areas or situations is also helpful. Avoiding extended time in noisy crowds or crowded indoor experiences in particular.

This all has led to a lot of stress on our lives. But I’ve not reached out or talked with my family directly because of their deeply conspiratorial thinking. I don’t want the focus to be on some invisible enemy or some invisible cause of this. Occam’s razor would state that it’s mostly likely due to genetics. Some brief research showed that in particular a maternal parent has a decent chance of passing on epilepsy to a child.² And honestly this is something we’ve been worried about for years. Though I don’t think either of us expected to see absence seizures as the first symptom.

And through all of this all I can hear are all the medical conspiracies my mother and SIL would be spouting if they had personal knowledge of all of this. (The following is a list of things I have PERSONALLY heard from my mom’s lips). It’s the powerlines, the radiation from 5G towers, Bluetooth signals damaging the brain, the chemtrails from planes, poison in our food,³ dental fillings, nanobots, fluoride in the water, chemicals in public pools, and the vaccines (of course can’t forget that classic). This isn’t even an exhaustive list. Sometimes it feels like nothing is safe from conspiracies. Especially for people who are deeply embedded in conspiracy communities.

But quite clearly genetics is the clearest link and the most probable answer for “why?” My son lost the preverbal “roll of dice” genetically. And will more than likely live his entire life with this condition. No miracle detox or specialized diet will cure his epilepsy. And I don’t want or need judgment from my siblings or parents about how a “pure” lifestyle or diet will cure him. Quite honestly the whole mess of health-related conspiracies reek of a mindset focused on being “better” from others in some way. A “pure diet” or “pure lifestyle” is the source of true health. Often ignoring social, environmental, or economic factors that might contribute to unhealth.

Someone I clearly point to as a leader in this movement is RFK Jr. And those around him have accused him of eugenic like thinking.⁴ Pointing out that “only the strong survive” seems to be his whole approach to disease prevention. While he may not be directly calling for the eradication of the “lesser” humans. He has made it clear with his language⁵ and polices he does indeed think of autistic and other neurodivergent folks as “lesser.” And he seems to believe or suggest that a better diet and a healthier lifestyle would cure or prevent neurodivergent children and adults from existing. If you think I’m exaggerating, please see his previous comments about sending folks “addicted” to mental health medications to “wellness camps.”⁶⁷

It’s tiring both on broad societal level and on a more personal level. I just want my kids to get the care they need medically to help them have outcomes where they can live at their greatest potential. But I truly do not have the patience to listen to conspiracies about why my child could be acting this way. And what diet I could try to cure or what supplement my children should take to detox from heavy metals. None of that is going to help. It’s extremely frustrating to me that my family and my siblings (at least so far) continue to support anti-medicine conspiracies. It’s clear to me from the outside that their “pure” diets and lack of medical interventions and vaccines have not spared their children from disability or neurodivergence. Disabled children and children with neurological quirks (like autism) are still going to exist.

The only thing I’ve seen (from the outside) is an increased unwillingness to admit that the child may have a permanent disability or be neurodivergent. After all, if they did everything right how could it be autism or ADHD? Their child is “pure” and hasn’t been exposed to any “toxins” that would cause disability. It couldn’t possibly be “x” even if said child has all the stereotypical symptoms of “x.” Their diet, health, and outdoor lifestyle all make it impossible for the child to be disabled.

And I do not want either of my children growing up in a family where they will constantly be looked down on because they aren’t “pure” in the right way. Whether that be in a religious sense or a physical health sense. My mom has made comments way before she even knew we had issues with fundamentalism that our children shouldn’t really be around their first cousins if they are vaccinated. This statement was based around a conspiracy that an immunized child will “shed” toxins and illness to nonvaccinated children. But even if their statement are not as overt the feelings and attitudes about illness remain the same. And I know my parents’ deepest hearts they believe that our children our ill due to our lack of “morality” and “health.” Put simply we are atheist and vaccinate and that’s why our kids have problems.

And I have absolutely no fucking patience for that mentality. My kids are neurodivergent and dealing with chronic health issues….because their parents come from a long line of (probably) neurodivergent relatives.⁸ And because their parents have or had chronic health issues. Also, just sometimes you don’t get an exact reason why. Sometimes you just get a shit genetic draw. It’s all highly random and no one can exactly predict which illness or neurodivergent traits will pass on to your offspring.⁹ No diet or lifestyle can prevent or ward off genetic traits.

The concept of moral purity driving physical health is also just exhausting to me. I personally had my worst years when I was at my most spiritual moments. I had extreme anxiety associated with my spiritual beliefs and I would constantly feel like I was a failure in the eyes of the divine. Nothing I did would ever be enough. I would never be good enough. GOD WAS ALWAYS WATCHING.¹⁰ And I’d never be good enough for him. My anxiety and fear just feed on my religious beliefs, and it was not a healthy thing for me. I could see those exact same fears creeping into my autistic child’s life and I knew I did not want them to experience the same things I had as a child. No child needs to grow up in constant fear of an omnipotent being always watching them and judging their every move.

Suffice to say, I have a multitude of reasons I haven’t been able to reach out or talk with my family about any of this. And it’s felt extremely isolating. This last year has brought a lot, and they’ve been completely left out of all of it. (For good reason). I’ve removed most of my family from social media as well and cut back overall on personal content. I already get enough posts and messages secondhand from what my spouse receives over social media from my mom. Recently this was a video on how a chiropractor can stimulate an older child’s infantile reflexes to cure neurodivergent behaviors in a child. (If it’s not already clear already this is junk science and has no basis in reality.) Honestly it was kind of amusing as his cure for neurodivergent behaviors was rocking the child, swinging the child, and tumbling the child. All “treatments” were fairly close to self-soothing behaviors that are fairly typically expressed in neurodivergent kids.

Back to the topic at hand, in less than a year we’ve had SO MUCH thrown us. And there has been very few people we can talk with it about. Even my spouse’s family has had a lot of presuppositions around what autism looks like in a child. And I know my spouse has spent a lot of energy educating her family about autism. I will give them that they have been supportive since. But with every announcement RFK Jr makes FOX and MAGA eat it up and they spread the disinformation as far and as wide as they can. This can make communication and education extremely difficult with a conservative parent (even a loving and caring one).

But as a whole my whole half of the family (outside of a few more distant relatives) have been completely left out of it. It’s not that I think they don’t care it’s how that “care” will be shown towards my children. And I don’t want love mixed in with pressures to believe a certain way or to have to adopt a “crunchy” lifestyle in order to truly feel like I can have their support. And I can’t personally deal with the high levels of conspiratorial thinking that has destroyed my mother’s critical thinking. Conspiracies are consuming her and I feel like that just as much as religious differences has kept me from any type of relationship with her. Or even with my siblings who are close (emotionally) to her who have slowly adopted these conspiracies as parts of their lives.

I’ve listened over and over again to a band called “Spanish Love Songs” and they have a song that to my impression focuses on a loved one and the grief they are going through watching their loved one die. One of the lines is, “Conspiracies melting your brain. Whatever it takes to make you feel safe.” And every time that line pops up I think immediately to my mom. She’s kept herself safe using these unhealthy coping mechanisms and she’s slowly becoming more distant and unrecognizable to me. Whatever she once was has slowly been eaten alive by conspiratorial thinking. Every single conversation has to include a catastrophic conspiracy theory. It’s awful.

I’ll end again how I have in a recent post, with a song. (Same band and album as mentioned above)

1. https://pubmed.ncbi.nlm.nih.gov/23045563/ “Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity” ↩︎
2. https://pmc.ncbi.nlm.nih.gov/articles/PMC7818075/ ↩︎
3. This one covers a whole slew of things. My mom loves food related conspiracies. Gluten is a part of this. Added sugar. Wax coatings on fruits are secretly poisoning us. Trace Chemicals on Chicken. Antibiotics in the meat. Growth Hormones in the meat. I could keep going but will stop there for brevity. ↩︎
4. CDC’s Dr. Demetre Daskalakis Resigns in Fiery Letter Denouncing Trump and RFK Jr | Them “The intentional eroding of trust in low-risk vaccines favoring natural infection and unproven remedies will bring us to a pre-vaccine era where only the strong will survive and many if not all will suffer. I believe in nutrition and exercise. I believe in making our food supply healthier, and I also believe in using vaccines to prevent death and disability. Eugenics plays prominently in the rhetoric being generated and is derivative of a legacy that good medicine and science should continue to shun.” ↩︎
5. https://www.pbs.org/newshour/politics/fact-checking-robert-f-kennedy-jr-s-statements-on-autism ↩︎
6. https://www.teenvogue.com/story/rfk-wellness-farms-us-disabilities ↩︎
7. Weekly Roundup: Tylenol Trump at the UN + Political Violence – Straight White American Jesus (Check out the podcast SWAJ for more in-depth discussion around eugenics and current MAHA health policy). ↩︎
8. A theory I can’t ever fully explore because of my family’s extreme hesitancy around seeking health care in any form. ↩︎
9. RFK, Jr., Is Completely Wrong about Autism, Say Scientists and Parents | Scientific American (Article talks briefly about genetics and autism). ↩︎
10. Check out Kyle Parnell’s “Joyful Judgement” video series for a very clear horror experience of this exact religious feeling. (Check IG or Tiktok as the embed options aren’t working well for wordpress)
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