Digestive issues

I have 2 autistic sons - both adults (I’m autistic too). 
one of my sons has struggled with digestive issues for years - about 15 years - and is still struggling to improve matters. He went gluten free which helped for a while - but doesn’t seem to working anymore. He has a dairy allergy (and avoids dairy) - and has asthma. Up to about the age of four he had bad eczema too - which thank goodness went away. 
what hasn’t gone away is problems with digestion - nausea, abdominal pain, weight loss, upset stomach - he has such frequent bouts of these issues. His doctor put him on PPIs for ages - which only provided some relief - but he had to come off these as it’s not safe to stay on them for years (and he took them for about 4 years off and on - which is a worry). 

I’ve sometimes read that autistic people more commonly have digestive issues - has this been other peoples experience? And if so - has anything helped?

Thanks. 

Parents
  • Have you looked in to FODMAPs? https://www.gloshospitals.nhs.uk/media/documents/FODMAP_dietsheet_for_website.pdf 

    This is not a specific 'diet', but a starting point to eliminate a great deal of 'food items' many humans cannot naturally digest. 

    I had thought I had coeliac, and once I eliminated that completely, I could digest dairy (though butter is different and I never had a problem with this). 

    But I've also had issues with legumes/pulses (which include the peanut - not a botanical nut), and high fibre veg, mostly the mustard family - cruciferous vegetables. But I do have difficulty with alliums (Oninons/garlic).

    I've spent a great deal of time over the years working out what I can and cannot have. I've started looking into botanical properties and what's related. For instance, after having trouble with Spinach many years ago, I discovered it is a distant relative of Wheat. So I did a little research to find out what nutrients Spinach has and where else I could get those from. I didn't eat a lot of it. But I was curious. Now I do this for everything. I've discovered really interesting things too! Like comparing a pineapple to a potato: https://kale.world/potato-vs-pineapple/ They just have some similar properties. I discovered this because I stopped craving potatoes when I started drinking more pineapple juice. the Key here is to Listen to what we're craving.

    I struggle with other things like low blood pressure, so I need to make sure I get enough salt. And if one is simply thinking "what have I been told is healthy" we might not opt for something salty, or to pay attention when the body is asking for a few tablespoons of say, raw cranberry juice or a squeezed lemon.

    Lemon... is something I've found which is incredibly helpful for digestion.

    But major word of caution. Since my dietary restrictions are a broad range, I always have to read everything. I have found in the last few years there is actually very few pre-packaged GF products I can actually digest. Everywhere they are adding chickpea or ancient grains or even oligosaccharide fructans into anything from GF breads to cereal to sausages and I cannot digest any of these. Schar makes a white ciabatta in a pack and it is the only bread I can buy, so I just make my own a few times per week - slice it and freeze it. 

  • Thanks JuniperFromGallifrey - that’s really interesting and very helpful. It seems that a huge amount of research and trial and error is required when it comes to this. Do you think there really is a link between autism and digestive issues? My son is being very scrupulous about avoiding products with Gluten - and it’s not easily done - especially as he is living abroad at the moment and that doesn’t help. The country where he lives doesn’t have as much choice of ‘Free From’ foods  as we have in the U.K. 

  • There's so much research to be done, however, we do know micro particles affect the lungs and the gut when breathed in. We also know autistics tend to be hyper-sensory, which in a positive sense means the ability to calculate harmful compounds or reveal particular notes or notice systems otherwise invisible. We can have a better awareness but this comes at a cost, which is the need to shield children from forces in their environment which they've not acquired the discipline to control or work around. 

    I would reason that given a little understanding about this, and how we might be better suited for a climate or milieu in an earlier tribal-like environment that we might not be fit to deal with the modifications that have happened in the last 100 years with agriculture and farming. We would be better suited with organic unmodified sources of nutrition, perhaps foraged and if this is true, autistics should probably not go full vegan ever. While I personally feel it's more human healthy to be moderate with almost anything, this might be something to just be aware of. However, we probably won't suit corporate farming practices due to this either.

    These are simply my thoughts on the matter from a bit of digging about. 

    Perhaps a rice maker would help him? 

Reply
  • There's so much research to be done, however, we do know micro particles affect the lungs and the gut when breathed in. We also know autistics tend to be hyper-sensory, which in a positive sense means the ability to calculate harmful compounds or reveal particular notes or notice systems otherwise invisible. We can have a better awareness but this comes at a cost, which is the need to shield children from forces in their environment which they've not acquired the discipline to control or work around. 

    I would reason that given a little understanding about this, and how we might be better suited for a climate or milieu in an earlier tribal-like environment that we might not be fit to deal with the modifications that have happened in the last 100 years with agriculture and farming. We would be better suited with organic unmodified sources of nutrition, perhaps foraged and if this is true, autistics should probably not go full vegan ever. While I personally feel it's more human healthy to be moderate with almost anything, this might be something to just be aware of. However, we probably won't suit corporate farming practices due to this either.

    These are simply my thoughts on the matter from a bit of digging about. 

    Perhaps a rice maker would help him? 

Children
  • One of the first things I noticed with my autistic “spidey sense” (long before I knew about autism) was chemical fragrance. It would hit my gut and Immediately hurt internally. I started to find myself angry about chemical fragrances and could never work out why no one else was bothered or how they managed to infect society and how tobacco was banned but not incense or plug ins. My grandmother had this issue as well so I didn’t feel wrong but goodness. 

    I’ve had a few difficult situations with flatmates and others. Now if I can avoid Uber, I will. For some reason they all have chemicals in their cabs. 

    When I was younger I remember a magazine called the Utne Reader which exposed a lot of corporate nonsense regarding farming. There’s probably a few days of conversation to be had on each of these topics alone!

  • I totally agree with all you’ve written here JuniperFromGallifrey.

    I come from a family of farmers and modern farming practices are pretty appalling. They get encouraged (and paid) to plant one field of bird friendly flowers - and in the next field they’re killing off last years ‘nature’ project by killing off the whole lot by spraying it with ‘Round Up’. 

    About 85% of the food in your average supermarket is incredibly unhealthy. The cleaning products they sell are incredibly toxic and most unnecessary. Even seemingly pleasant things like scented candles are really bad for our health.