Nearly every autism parent I connect with, at conferences, at talks, and online, has this sneaking fear. And sometimes the fear isn’t very far in the background.
This niggling, nasty, voice says things like:
As an autistic bio-hacker, I need you to hear this:
It’s not your genes – genes change expression depending on environment – it’s your environment. You are not only good enough, you are better equipped to be good enough than anyone except your autistic child (who may not be able to communicate, so you’re doing your utmost to notice and translate, way better than any specialist could do).
I absolutely know this, and can support this truth with medical research direct from the medical journals, as well as from my own experience rebuilding my own function, and helping so many others do the same.
Our current model of medicine and health is outdated (and currently it takes about 50 years for changes in medical understandings to impact patient care). Even just a few years ago, we didn’t know that each of our bodies is a planet for microbes whose cells outnumber ours by 10 to 1. Whose genes outnumber ours by 100 to 1. And whose activities are intimately supporting our ability to:
Unless we’re informed and careful, the air we breathe, the medicines we take, the beverages we drink, the clothes we wear, the products and appliances we use, the food we eat, the things we smarm on our skin, the beds we sleep in, are killing our good microbes (our probiotics), and are leaving alive the generalist microbes. Or the microbial Dr. Jekylls are turning into Mr. Hydes…
The more busy and diverse a city is, the more it tends towards fewer and fewer kinds of life being able to survive in that city. Fewer and fewer creatures can find homes, or access the foods that are best for them. What the most toxic cities are left with are the generalist species: the cockroaches and ants, the rats and mice, the pigeons and crows. These are scavengers which can make do, no matter how bad things get.
That’s what the generalist microbes in our bodies are like. They can survive in the killer environment we’ve turned our bodies into. They don’t break food down so we can use it; they break down food for themselves, and leave a bunch of toxic waste behind. And the impact is a lot worse than pigeon poop on park benches.
These scavenger generalists don’t make happy hormones and neurotransmitters. They unbalance our hormones, and they leave us agitated, jittery, inflamed, sore, chronically-ill, anxious, depressed, exhausted, and often sleepless, because their waste products do so much inflammatory harm.
Some of their wastes are cardiotoxic (hurt the heart, the veins, the arteries, and the circulation, causing heart disease and strokes).
Some of their wastes are neurotoxic (hurt the coordination, communication, thinking, memory, navigation, speaking ability, etc.), particularly the wastes of a Jekyll-turned-Hyde named Bacteroides fragilis. Ask me about B. fragilis sometime – you can turn that Mr. Hyde back into Dr. Jekyll, and stop the harm!
It is. In seniors it’s called Dementia, Alzheimer’s, Parkinson’s, and a few other things, but it’s virtually the same problem as autism, only in a different vulnerable population. Fortunately, unlike autism parents (who are almost always strapped for cash), seniors tend to have more money to support researchers.
With seniors, we know the wonderful capacities they have before these experiences and skills begin to be lost to neurotoxicity. And we know that senior’s downhill slide into Dementia is partially to fully reversible for 95% of them. The problem with autism is, we don’t know a child’s capacity, because he or she hasn’t grown into their experiences and skills yet.
Your child’s autism is being caused by a cultural misunderstanding about how to be healthy, and how to have healthy children. It’s a misunderstanding that’s ingrained in every aspect of how we live… AND you can say “Oops” and start making health-supporting choices, at any moment.
The biggest and only necessary cost is that you are going to have to be like a salmon swimming upstream.
To most effectively help your child thrive with autism, you almost have to become counter-culture, making different daily choices. It doesn’t have to cost anything different from what you’re paying now (though your cost categories may change). But swimming upstream against what almost everyone else is doing can feel very, very isolating.
Been there. I started bio-hacking in the 1970s. You’re in luck with your timing. Right now, more and more families and individuals are choosing to swim upstream, for good reasons, ones well-supported by the medical research.
Some are dealing with learning disabilities, developmental disabilities, and dementia… like you.
Some are dealing with depression or anxiety.
Some are dealing with Bipolar or Schizophrenia.
Some are dealing with hormonal disruption and infertility.
Some are dealing with heart disease and strokes.
Some are dealing with Hypoglycaemia and Diabetes.
Some are dealing with arthritis and other autoimmune problems.
Some are dealing with sleep disorders, skin disorders, hair disorders, nail disorders, anything-chronic-and-inflammatory disorders.
Some are dealing with cancer (and other deadly inflammatory disorders).
That to keep doing the same thing and expect different results is insane. If we keep doing what’s “normal” in our culture, we won’t thrive. We aren’t even likely to survive…
It’s true, some friends and family members aren’t willing to swim upstream. That can be really tough.
But it comes down to your quality of life, and your family’s future. How different are the results you want from what you currently are experiencing?
If the differences are small or hard to imagine, or if your child’s degree of challenge doesn’t feel too crippling, you might find the cost of change higher than the perceived gains. Any change is hard. It’s ok. You’re doing the best you can, AND there may still be some little changes that don’t feel as difficult as swimming upstream, yet can bring big quality-of-life rewards.
Are you willing to stop doing things the same way you always have, even if it means swimming away from people who can’t or won’t support you?
If you’re not, it’s no blame to you. Love is the most powerfully healing force out there (read “Love and Survival” by Dr. Dean Ornish). You’re doing the best you can. If your supporting friends and family are that important to your quality of life and ability to cope, and they aren’t willing to swim upstream, there are still little tweaks that can make big differences.
Yet more and more of people are choosing to swim upstream, making counter-culture choices, and retrieving health, well-being, joy, and capacities they never knew they had, or never thought they’d see again. They’re doing this by taking care of their little friends.
If you choose to swim upstream, you’re going to be less alone in taking care of your little friends, because all these other people with chronic inflammatory problems are out there, also choosing to swim upstream.
Our little friends are the probiotics we want to welcome back into our bodies and lives. We want to cultivate the garden of our bodies, do the internal and external housekeeping. We want to create a place for probiotics to land, make a home, and support us again.
It’s not enough to just take a probiotic pill. That’s like sending a yuppie family driving through a crack neighbourhood and expecting them to do anything except keep the doors locked, the windows closed, and the vehicle moving.
In order to support the specialists (like doctors and engineers) that the pills contain, you need the ordinary probiotics who are like dry cleaners, hardware suppliers, and grocers, to support the specialists.
And the diverse and robust probiotic community your health requires won’t thrive until you start swimming upstream, making daily choices that are different from the mainstream.
You can take care of your little friends, too… and you, your autistic child, your whole family can reap the well-being, quality-of-life, and optimized-capacity rewards. It’s not rocket science. It’s not thousands upon thousands of dollars spent on specialists and travel and interventions. It’s as simple and low-impact as things like changing your toothpaste.
If you weren’t a good enough mum, you wouldn’t be reading this blog post, trying to figure out how to make a positive difference for your child’s quality of life now, and for your child’s future.
In trying to help your child, you will make mistakes. But they’re honest mistakes, and you’ll learn from them as you go. And with these kinds of mistakes, there’s no harm done, you just try the next best option, and the next after that.
If you waste time castigating yourself, you’ve lost time that you could have been enjoying life, enjoying your family, enjoying the process of discovering what changes are going to make the biggest and best differences for your immediate and long-term future. You want satisfying? Those discoveries are satisfying!
There is no “fault”. There is no “not good enough”. This is life. This is learning. This is each of us doing the best we can. This is our global culture needing to step back and say, “Oops, we didn’t know we needed to take care of our little friends”, our global culture needing to change direction if we want to stay fertile, stay sane, and stay alive.
Join me. Swim upstream, even if it’s just in little ways. I’ve been making it fun for myself and for others for a long time. When you know things have to change, you might as well enjoy it…