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Is autism all in the brain?

TheCatWoman

Following some of the other threads exploring how we manage autism and live in a world not made for us. We've talked a lot about things like burnout, exhaustion, in ther threads we've talked about sensory issues and digestive problems. But does autism only manifest in things that in old fashioned terms could be called our "nerves".

What if it creates other changes in our bodies, like in my case an increase in allergies? The physical changes might not be huge or particularly profound, until something triggers them, like a medication or an operation. I know for myself there are certain medicines that just don't work, like valium, I can take 4 times the prescribed dose and it does nothing, 60ml IV and it lasted about 30 mins then I started fighting again, and I walked home, I should have been flat out, sleepy and maybe a bit happy. This was at the dentists by the way, I really don't like the dentist! I've been told I heal like a child, my recovery time from surgical wounds is about half what it would normally be for most adults.

I think this is something thats overlooked, to me it makes sense that if our brains are differnt, then it will not be unreasonable for there to be physical changes in other areas too, not just in how we interact with the NT world around us.

 Personailised medicine is somethng that's only just being explored, its's starting to be better explored and understood in groups, such as how things like cycle cell anaemia only effects certain groups. One of the problems with medical research are the numbers of variables there are and how these variables are managed and minimised. This has led to medical testing largely being done on young healty white men, they don't have a menstral cycle to get in the way, they won't be pregnant and a whole bunch of other stuff. So basically they've been the baseline for all medicines Would it be such a surprise if these medicines didn't work as well or had unintended consequenses for other groups, such as different ethnicites, genders and neurologies?

Parents
  • Your post resonates with me deeply  . I am also autistic, and for years I have felt exactly what you are describing. Modern clinical research is finally catching up to what many of us live every single day: autism is far from being "all in the brain." It is increasingly understood as a systemic, whole-body divergence that closely interacts with our immune, endocrine, and metabolic pathways.
    Because I have a professional background in the sciences, I’ve fortunately been able to dive into the literature myself. Yet, it is only very recently that I’ve managed to "join the dots" between the complex hard science and my own physical body. My experience has also shown me that the wider healthcare system rarely has this integrated level of insight. Traditional medical settings often treat these multi-system risks as isolated issues, completely missing how they overlap in an autistic profile.
    My own diagnostic history has been a real-world lesson in this "Neuro-Cutaneous-Immune Axis," echoing the systemic traits you mentioned across three major areas:
    First, our immune system baseline can be incredibly hyper-vigilant. I have been diagnosed with both Hashimoto’s thyroiditis and psoriasis. Clinical papers show a strong genetic and biochemical overlap here (particularly via shared inflammatory Th17 cellular pathways). When my nervous system faces the chronic, daily stress of navigating a neurotypical world, it triggers immediate physical flares in my skin and my thyroid.
    Second, this systemic variance heavily impacts our internal organs and the gut-brain axis. I am currently experiencing gallbladder symptoms, which are tightly linked to the low metabolic motility caused by my Hashimoto's. In an autistic body, our organs don't work in isolation—what happens in one system can create a massive domino effect across our entire digestion.
    Third, our biochemistry alters how we process external substances. Just like your unusual experience with Valium, my body has highly atypical drug sensitivities—I have a severe, documented allergy to penicillin. Our bodies seem to flag standard medications and compounds entirely differently because our metabolic pathways are uniquely wired.
    Thank you so much for starting this thread. It is incredibly validating to see someone else voice this. We aren't just dealing with different wiring upstairs; we are living in bodies that process the entire physical world differently from the inside out.
    (Note: To remain fully transparent under forum guidelines, I used an AI assistant to help me organise and articulate my personal health history alongside the clinical terms for this post. This is shared strictly as personal lived experience and is not intended as medical advice.)
Reply
  • Your post resonates with me deeply  . I am also autistic, and for years I have felt exactly what you are describing. Modern clinical research is finally catching up to what many of us live every single day: autism is far from being "all in the brain." It is increasingly understood as a systemic, whole-body divergence that closely interacts with our immune, endocrine, and metabolic pathways.
    Because I have a professional background in the sciences, I’ve fortunately been able to dive into the literature myself. Yet, it is only very recently that I’ve managed to "join the dots" between the complex hard science and my own physical body. My experience has also shown me that the wider healthcare system rarely has this integrated level of insight. Traditional medical settings often treat these multi-system risks as isolated issues, completely missing how they overlap in an autistic profile.
    My own diagnostic history has been a real-world lesson in this "Neuro-Cutaneous-Immune Axis," echoing the systemic traits you mentioned across three major areas:
    First, our immune system baseline can be incredibly hyper-vigilant. I have been diagnosed with both Hashimoto’s thyroiditis and psoriasis. Clinical papers show a strong genetic and biochemical overlap here (particularly via shared inflammatory Th17 cellular pathways). When my nervous system faces the chronic, daily stress of navigating a neurotypical world, it triggers immediate physical flares in my skin and my thyroid.
    Second, this systemic variance heavily impacts our internal organs and the gut-brain axis. I am currently experiencing gallbladder symptoms, which are tightly linked to the low metabolic motility caused by my Hashimoto's. In an autistic body, our organs don't work in isolation—what happens in one system can create a massive domino effect across our entire digestion.
    Third, our biochemistry alters how we process external substances. Just like your unusual experience with Valium, my body has highly atypical drug sensitivities—I have a severe, documented allergy to penicillin. Our bodies seem to flag standard medications and compounds entirely differently because our metabolic pathways are uniquely wired.
    Thank you so much for starting this thread. It is incredibly validating to see someone else voice this. We aren't just dealing with different wiring upstairs; we are living in bodies that process the entire physical world differently from the inside out.
    (Note: To remain fully transparent under forum guidelines, I used an AI assistant to help me organise and articulate my personal health history alongside the clinical terms for this post. This is shared strictly as personal lived experience and is not intended as medical advice.)
Children
  • in reply to Phased

    I think this is why I've found alternative, holistic therapies often work better for me, they're taking in my whole bodies response rather than just looking at symptoms. I've used herbs loads since a young age I've been fascinated with them, one of the differences is a herb contains a whole load of substances that work together to effect healing rather than isolating one and saying 'its the active compound', they're pretty much all active. Some people maybe able to better tolerate a herbal form of a medication better than the pharmacuetical one, polypharmacy happens within one herb, you'll have a compound that kills pain, alongside one that stops you feeling sick. It's like how you need one vitamin to help absorb another.

    Not all alternative therapies work for me either, I've had traditional and western accupuncture, my body just seemed to be immune to it. I can' ttake pennicillin either, or Flagyl, I was given this without my knowlege in hospital via a drip when unconcious from other drugs, the consultant said it would be OK as it wasn't passing through my liver, Oh how wrong she was, I felt like John Hurt in Alien just before the things bursts through his chest.

    One of the things I've never understood is why anything to do with PMS or menopause isn't dealt with by endocrinologists?

  • in reply to Phased
    I wanted to share a quick "Layperson’s Guide" to a fascinating piece of science that I mentioned in my other replies. It helps explain the physical side of what many of us experience.
    Scientists use the term called the "Neuro-Cutaneous-Immune Axis." It sounds like heavy medical jargon, but it actually breaks down into a really simple concept. It just describes the three-way, non-stop conversation between our brain/nervous system (Neuro), our skin (Cutaneous), and our body’s defense system (Immune).
    In many autistic profiles, the literature suggests this conversation is turned up to a much higher volume. Here is the basic breakdown of how researchers explain it:
    • Brain and Skin are Siblings: When an embryo is growing in the womb, the exact same initial layer of cells splits to create only two things: the entire nervous system and the skin. Because they share the exact same origin story, it makes sense why a uniquely sensitive autistic nervous system so often goes hand-in-hand with uniquely sensitive skin.
    • The Stress-Skin Connection: Our skin is packed with tiny immune cells that sit right next to our nerve endings. When we experience sensory overload or navigating a world not built for us, the nervous system sends signals down those pathways. In response, the skin can rapidly react with localized inflammation. This is why many of us notice sudden itching, flushing, hives, or psoriasis flares during stressful times.
    • The Shared Inflammatory Highway: Clinical research shows that our immune systems often have their defensive dials set to "hyper-alert." The exact same internal chemical pathway that can lead the immune system to target the thyroid (like in Hashimoto's) is often the very same pathway that tells skin cells to multiply too fast. It's essentially one single highway of inflammation expressing itself in different areas of the body.
    For me, learning about this was incredibly validating. If you’ve ever felt like your physical body is reacting in tandem with your mental exhaustion or autistic burnout, there is a massive framework of science showing that you aren't imagining it. Our brains, our immune systems, and our skin are operating as a single, deeply connected circuit.
    (Note: To remain fully transparent under forum guidelines, I used an AI assistant to help me translate these complex clinical concepts into everyday language. This is shared strictly for educational and community discussion purposes and is not intended as medical advice.)
  • in reply to Phased
    I wanted to add another quick thought on something you mentioned about personalised medicine only just being explored. Given my own background, this is an area I watch closely, and the reality is both incredibly exciting and frustratingly slow.
    In research labs, we are actually very close. Scientists are now able to look at individual genetic profiles, metabolic markers, and complex "whole-body" data to see exactly why certain groups or neurologies react differently to medications. The hard science is proving that a one-size-fits-all approach doesn't work.
    However, in everyday clinics and hospitals, we are still frustratingly far away. The mainstream healthcare system is highly compartmentalised. Specialists are trained to look at organs and symptoms in complete isolation—treating the skin, the thyroid, or the brain as separate entities rather than an interconnected system. Because of this structural blueprint, it takes a long time for laboratory breakthroughs to change how an ordinary GP or hospital consultant treats an autistic patient.
    Until the wider medical system catches up and moves away from those old baseline models, threads like this are so vital. It really highlights how much we have to understand our own bodies and advocate for ourselves!