It strikes me that I should be writing more about the process I'm undergoing, what I've discovered, the changes I'm experiencing. But I don't even know where to start.
There are so many distinctions I've made, many with profound importance for our society, our health, our consciousness, our future.
I guess I can start with the exam.
Throughout my life, I've had a mix of what I'd describe as very good health and robust constitution but also a litany of chronic issues - poor digestion, autoimmunity, chronic infections, Chronic fatigue, fibromyalgia, dysautonomia. Increasingly, I've realised that I've had quite severe ADHD and at various times some features of ASD.
The tools and approaches that I've studied and use clinically in my program have helped me make lots of progress. No more chronic fatigue or fibromyalgia. My digestion is better than it's ever been.
And yet, I could only get so far but it felt like nothing I was doing was properly moving the needle into truly thriving. My immune system was still whacky. My nervous system was still dysregulated, despite meditation, journalling, all the herbs, all the gadgets . . .
At the beginning of June, I went to see Dr Robert Melillo, a developmental functional neurologist and researcher. He and his team performed an exam that, among other things, tested for retained primitive reflexes. Almost all of mine were still retained.
Let's back up for a moment: what's a retained primitive reflex? A primitive reflex is a movement pattern that usually starts in utero and that we're born with. When we're born, our brains are very immature so while the more advanced parts of the brain are in the process of developing (which happens in response to movement and sensation), we have these pre-installed movement patterns coming from the brainstem that have a dual role: they allow us to do certain movements for survival, like suckling or the startle response and then moving into things like rolling and crawling. And activation of the reflexes themselves helps to develop the higher levels of the brain.
As the brain develops, these reflexive motor patterns get inhibited by the more advanced structures like the pre-frontal cortex. They're still there but can be used for more complex movements and thought patterns.
So what does it mean that a grown-ass, middle-aged woman has almost all of these present on exam?
Well, a couple things. In an adult, these can be present if someone has frontal lobe brain damage, such as from a head injury or a stroke or neurodegeration. In this case, the presence of these reflexes are called "frontal release signs," as the impaired frontal lobe releases it's inhibition of the reflex. They can become present (we're increasingly finding) in an adult who has none of the afore mentioned problems but is under such profound stress, that their frontal lobe atrophies and becomes less active and stops inhibiting these brainstem reflexes.
(Know any adults affected by profound chronic stress?)
Or they can be present in someone whose frontal lobe never developed normally in the first place. I probably have some combination of these factors (developmental, head injury, and stress related atrophy). But let's look at development, for me as the largest factor.
Because this topic is so big and multi-faceted, today, I'll focus on one simple observation. Yesterday, as I was walking my dog, I was experiencing effortless good posture for the first time in my life. As a child, between the ages of 2 and 12 I was a gymnast and/or dancer, competing in national dance competitions.
But put me at a school desk or have me stand for any period of time and I was slumped over, finding it very hard to sit up straight, only with conscious effort and not for very long.
How the fuck is that even a thing? A gymnast and dancer with poor posture?
At various times as an adult, I did a course of Pilates and have dipped in and out of regular Yoga practice. My core always got stronger, to be sure, but I never experienced an effortless upright posture.
So what's going on here? Let's go back to our brain development. When a newborn infant is born, it can't even hold up its head. As time and maturation progress, the baby can hold up its head and at a certain point, it can sit up. It can then crawl and eventually the baby walks.
Upright standing posture happens after a lot of developmental groundwork has already been laid.
One distinction we need to make is that this isn't an all or nothing game. Clearly, I could walk. I wasn't nor am I now severely disabled. Indeed, I was competing in national dance competitions and did basketball at junior olympic levels as well. But I did have brain maturation issues over the first year of life that effected things like upright posture (as well digestion, cognition, focus, nervous system regulation . . .) throughout my entire life.
Of course, all of this is intimately linked with cognition. Neurologically, our thoughts are internalized movements. An impaired or unevenly developed motor system is the system of a disorganized and challenged thinker. Well, I say "of course," but this isn't actually common knowledge, despite it being well established.
What I'm starting to describe here is the tip of a very large iceberg. Looked at through a neurodelopmental lens, everything about my life makes sense. My health issues, such as autoimmunity, chronic fatigue, fibromyalgia, lax joints, and ongoing musculoskeletal issues are perfectly clear.
My exam revealed that I'm not even really left handed (a bombshell I'm still recovering from).
It also showed a positive Babinski sign on my left foot - which is basically a slam-dunk for an under-developed (or atrophied or damaged) right frontal lobe. This is precisely what you find in brain scans of people with ADHD.
My mental, emotional, cognitive and interpersonal challenges also make sense. Being "gifted" in math while not being able to understand what I was reading. Mental health struggles throughout childhood and adolescence with terrible insomnia into my teens and digestive issues throughout my life (which have fortunately gotten better with herbal treatment in the last few years).
What I am starting to describe here is neurodiversity. It is developmental delay, with the "gifted-ness" that often accompanies it, as certain brain regions are immature and others over-developed, not unlike the result of doing one-handed pushups.
This suite of issues does run in families. And no, it is not genetic.
Here are some of the takeaways I hope to impart moving forward:
First, a message of dread: I was born in 1982. I suspect these issues, to lesser or greater extent, were present in about a quarter of the kids. Now it's 100%. None of our kids are developing normally. Some are only mildly effected. An exponentially increasing number are severely effected. The CDC last year actually changed the ages of milestone for walking and talking backwards by months because so few kids could meet normal, healthy milestones. They removed crawling as a milestone completely.
As a society, we couldn't do more to stunt the healthy development of our children if we literally sat down and tried to dream up ways to do this.
Next, we need to change how we view these problems and who it effects. It doesn't just effect "kids with ADHD" and their families. It effects everyone at every age. Because we're talking about the development, integrity and maintenance of the nervous system. Not only do you have a nervous system, but when you get in a car, you share the road with other people who are driving who also have nervous systems that need to be developed and maintained.
While we tend to think of these as pediatric problems - kids with ADHD, autism, dyslexia, Tourette's (all the same problem expressing in different ways, by the way), these are 100% relevant at every stage of life. In kids, it effects learning and behavior. If you are a stressed adult who's brain has developed but is shrinking, then this will effect every aspect of your mental and physical health. If you are in the autumn of your life, then this issue if not prevented may look like dementia and clumsiness.
Alzheimer's is like old people's Autism.
We also need to understand what these problems look like when they're mild and unlabeled. Fatigue, neck pain, mood issues, focus issues, memory issues, inflammatory conditions, digestive issues . . . these all need to be viewed from a developmental lens and at least rule out impaired development as a contributor before proceeding with other strategies.
From my perspective, everyone needs to be assessed. A primitive reflex exam is non-invasive and takes less than 10 minutes. If primitive reflexes are retained due to uneven brain development, nothing else you do clinically is going to address this issue.
And a message of hope: these problems are treatable and to varying extents, reversible, but most certainly preventable. I've received criticism for explaining this before. The "neurodiversity movement" has pinned its message for acceptance and inclusion on the story that these issues are genetic, therefor unmodifiable. Thus, anyone saying that it can be treated feels like a "judgement" and a lack of acceptance of a valid way of being.
When I treat a patient for IBS, I am not "judging" their irregular bowels against some sort of oppressive normative standard. However, I am agreeing that routine constipation and diarrhea reflect unhealthy function and feel that helping them resolve this helps them be more themselves.
Equally, treating someone with ADHD or ticks or other developmental issues is not a judgment against some oppressive normative standard. Melt-downs, noise sensitivity, inability to make eye-contact, reading problems, crippling anxiety - this is not "who the person is." And helping brain development to proceed where it got stuck allows the person to be a fuller, more authentic version of themselves.
I'm happy to answer questions about this. As someone who has these issues and is overcoming them, as a clinician, as a researcher, as a parent. We need to stop labelling behaviors and start talking about the nervous system and how we can support its healthy development and ongoing maintenance.
The future of our entire society literally depends on us understanding this.
Can you elaborate on "These suite of issues runs in families but isn't genetic." I'm with you on how children are bombarded in horrendous ways with stuff but can you speak more to those who feel that there is a generic component. Bc autism/asd/adhd symptoms run in families.
Excellent question. Let me try to explain this in a few ways.
There are a number of ways things can run in families without being "genetic." For example, let's say you have a parent with a relatively over-developed left hemisphere and a relatively under-developed right hemisphere - a pattern associated with autism and ADHD. This parent will be more likely to have trouble reading non-verbal cues and responding appropriately to his or her baby. They may have emotional lability. They may have dulled affect. They have problems self-regulating which means that they are unable to offer co-regulation to their child.
For the child, this is a lack of safety. And this lack of safety impairs development in a way that can increase the risk of autism and ADHD. So this is an example of how a syndrome can be passed through a family through nurture rather than nature.
Another example would be generational trauma. In mice, if you expose them to a specific scent and shock them, you can teach them to have aversion and a stress response to that scent.
But what researchers found is that you create aversion to that scent not only in the mice that you shocked, but also in their offspring and in their grandchildren. So the aversion to the scent is hereditary, but not genetic.Similarly, children and grandchildren of Holocaust survivors are shown to have blunted stress responses. Hereditary, not genetic.
There are also traits that run in families (nerdiness on the one hand, creativity on the other) that are not pathological in themselves, in fact, they can be very positive, but can create susceptibilities to neurodevelopmental problems when strong left or right hemisphere traits are coupled with environmental onslaughts. The highest rates of autism are in our technological capitals - Silicon Valley and Eindtoven in the Netherlands (the Dutch Silicon valley). Left-brain dominant nerds procreating in modern times . . . the traits are hereditary (not pathological) and lead to increased risk of impaired development in off-spring.
In terms of genes, studies looking at gene associations find large numbers of genes associated with these conditions, which is the opposite of a "genetic" condition. At the most extreme, a truly genetic condition is associated with a single point mutation on a single gene. But research finds association with over 100 genes.
However, what I've noticed is that these gene clusters that are associated with increased risk of neurodevelopment issues are mainly to do with genes that encode for how we adapt to our environment. For example, take MTHFR - a gene that's central to how we perform and regulate methylation. Methylation is used for detoxification, for balancing neurotransmitters, for modulating inflammation.
But it's also a primary way we epigenetically regulate our DNA - another way of saying this is that it's a primary way that we change our genetic expression in response to our environment and our experience. So when I see that a mutation in MTHFR increases the risk of autism, we can be "autistic" about it 😂 and focus on the gene as a single mechanism in a machine leading to disease. But what I'm seeing is that this mutation is actually amplifying environmental problems.
Also remember that the simulation we require for development (motor and sensory input) is itself an input that creates alterations in our genetic expression. This is how the brain grows itself. So for those genetically hamstrung in their efficiency in doing this, if we throw in the dozens of ways that we environmentally and socially disrupt this process then it's those with the genetic susceptibility who are going to harmed first.
But to me, that's still not a "genetic" problem, it's an environmental and societal one primarily.