Is autism all in the brain?

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?

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  • 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.)
  • 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?

  • Hi @TheCatWoman
    Your description of herbal polypharmacy—how the entire matrix of compounds within a plant work together synergistically to heal rather than isolating a single "active" ingredient—is a high quality piece of logic in my opinion. It explains perfectly why a uniquely sensitive system often responds far better to holistic pathways; the natural pairing of a pain-relieving compound alongside a nausea-preventing one treats the whole environment at once, rather than triggering a cascade of secondary side effects and I believe might be what a good western medical approach might be too.
    Regarding your experience with acupuncture, my own personal experience has shown me that it is a remarkably subtle art. I've found that different practitioners needling the exact same points on my body have elicited completely different physical responses from me. For a highly tuned nervous system, it isn't just about the physical mechanics of the needle; it is about the precision and intent behind it. Hearing that you also have a penicillin allergy, and reading your description of your reaction to Flagyl as feeling like the chest-burster from Alien, resonates with me too.
    To answer your question about why PMS and menopause are not routinely managed by endocrinologists, I think it comes down to the exact structural compartmentalization we’ve been analyzing. Historically, the mainstream medical blueprint was built to split the human body into rigid, isolated territories; the endocrine system was siloed off to look primarily at thyroid or pancreatic data, while anything relating to reproductive cycles was shunted into gynecology. Because of this artificial, rapidly becoming outdated division, everyday clinics completely could miss the macro-level reality that sex hormones, cortisol, and thyroid function are operating as a single, deeply interwoven endocrine circuit. For an autistic profile, where the neuro-immune axis is already dialed up to a high volume, this siloed approach I think might be why a person is bounced around between different specialists who might not be attenuated to look at the whole picture.
    I think that sharing these sorts of personal experiences —showing how a penicillin allergy, unique drug processing thresholds, and endocrine imbalances overlap across our separate profiles—is the sort of thing that might enable people to build their own self-governing manuals in the way that you and I have. It proves that our multi-system physical reactions are a consistent, neurological pattern rather than an isolated series of symptoms.
    Best wishes,
    Phased
Reply
  • Hi @TheCatWoman
    Your description of herbal polypharmacy—how the entire matrix of compounds within a plant work together synergistically to heal rather than isolating a single "active" ingredient—is a high quality piece of logic in my opinion. It explains perfectly why a uniquely sensitive system often responds far better to holistic pathways; the natural pairing of a pain-relieving compound alongside a nausea-preventing one treats the whole environment at once, rather than triggering a cascade of secondary side effects and I believe might be what a good western medical approach might be too.
    Regarding your experience with acupuncture, my own personal experience has shown me that it is a remarkably subtle art. I've found that different practitioners needling the exact same points on my body have elicited completely different physical responses from me. For a highly tuned nervous system, it isn't just about the physical mechanics of the needle; it is about the precision and intent behind it. Hearing that you also have a penicillin allergy, and reading your description of your reaction to Flagyl as feeling like the chest-burster from Alien, resonates with me too.
    To answer your question about why PMS and menopause are not routinely managed by endocrinologists, I think it comes down to the exact structural compartmentalization we’ve been analyzing. Historically, the mainstream medical blueprint was built to split the human body into rigid, isolated territories; the endocrine system was siloed off to look primarily at thyroid or pancreatic data, while anything relating to reproductive cycles was shunted into gynecology. Because of this artificial, rapidly becoming outdated division, everyday clinics completely could miss the macro-level reality that sex hormones, cortisol, and thyroid function are operating as a single, deeply interwoven endocrine circuit. For an autistic profile, where the neuro-immune axis is already dialed up to a high volume, this siloed approach I think might be why a person is bounced around between different specialists who might not be attenuated to look at the whole picture.
    I think that sharing these sorts of personal experiences —showing how a penicillin allergy, unique drug processing thresholds, and endocrine imbalances overlap across our separate profiles—is the sort of thing that might enable people to build their own self-governing manuals in the way that you and I have. It proves that our multi-system physical reactions are a consistent, neurological pattern rather than an isolated series of symptoms.
    Best wishes,
    Phased
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