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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?

  • in reply to TheCatWoman
    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
  • 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 Jamesmac
    Jamesmac said:
    I've heard that autistics tend to have somewhat elf-like features physically. IDK where I remember hearing it

    I would hope they were talking about Lord of the Rings elves and not Harry Potter elves Grin

  • in reply to Jamesmac

    I haven’t heard that.

    I’m wondering if your source mixed up ASD with Williams Syndrome.

    https://en.wikipedia.org/wiki/Williams_syndrome

  • I've heard that autistics tend to have somewhat elf-like features physically. IDK where I remember hearing it though.

  • 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.)

  • I’ve no idea but I have physical manifestations of things that are known to occur at a higher percentage in autistic people than in non-autistic people, e.g., digestive problems and hyper mobility. Are physical manifestations influenced by the brain when still in the womb or is it a hormonal influence or something else? I don’t recall hearing anything about this but they have to come from somewhere.

    The role of female hormones in ADHD are only beginning to be better understood, so it is likely that their role in autism will be researched too.

    Scientists and doctors have known for years that appropriate medicine dosage for females could vary from that of males, but I don’t think they have conducted further trials for all common drugs. Perhaps it wouldn’t be profitable for the drug companies. 

  • I don't think its being too cynical either to suggest that the pharmaceutical companies are primarily interested in profit and a generic type medication that can be handed out across the board to maximise profit margins is far more important to them than developing medications to specifically help individual groups.

  • 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!

  • I think autistic bodies do probably differ to things like pain, digestion, reaction to drugs, etc, because the wiring is different from NT's and because the autistic brain signals and regulates the body differently, there's probably a lot in what you say.

    It's also the case that historically, medicine has been based on a limited test sample of people and the misunderstanding of the needs of autistic people have gone under the radar.

  • 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.)

  • Yes, I find painkillers don't work for me, even the strongest ones don't work, at best they make me so tired that i am not focused on the pain anymore but it's still there 

    I always wonder about test groups and medications that never get approved. I often wonder if there are cures for many ailments out there that are shelved and never get released because it had bad side effects on a small amount of people but could be very effective for some. I often wonder if most of the medications available are just what's left as the medicine that's least dangerous to the majority but not necessarily the best available.

  • in reply to profdanger

    I know that GI issues seem to affect a lot of people with autism and theres increasing evidence of a gut-brain link, but, are we more likely to suffer with GI problems because we're autistc, or because we're stressed from living in a largely hostile environment?

    I don't function with my coffee in the morning, but I can't drink it after breakfast or I'd be awake all night. I've never had red bull or monster, they don't smell very nice to me, but cola will keep me awake.

    I know there seems to be little research, but is that because there's been research and it's failed to find any differences or because no ones asked the question and done any research?

  • So I think one answer to your question is already presented in the second sentence, and that is the digestive system is a proven difference between Autistic individuals and others. GI issues are extremely common, Ex. I have a client with Autism who has a long history of digestive issues and just was diagnosed with having a failing gallbladder. I myself occasionally suffer cycles of GERD-like and IBS-like symptoms that usually last about a month and then mysteriously disappear. It’s common enough that it has led some to believe in a connection to the mythical “leaky gut syndrome” and Autism.

    I do believe that NT people in general react to medications and chemicals differently than others. I’ve heard a claim - and I believe in it due to personal experience - that some stimulants such as caffeine have little to no effect on some NT individuals, particularly those with ADHD. A few energy drinks (ex. Red Bull and 5-Hour Energy) I can feel a little effect from, but generally coffee and all other energy drinks don’t help me feel more awake at all. I could drink a Monster and go straight to bed. However, this particular example would likely be a primarily neurological difference, so I don’t feel like that adequately answers your question.

    That’s the extent of what I’ve heard for comorbidities with Autism or physiological differences from NTs that are not necessarily neurological, intellectual, or cognitive in nature.