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A permaculture approach to managing and treating autism

 
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This thread is for discussing a permaculture approach to managing and treating autism spectrum disorders.
 
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The GAPS diet is a diet based approach to treating autism. Focuses heavily on bone broth and fermented dairy and veggies.
 
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My partner is in the autistic spectrum and he needed to quit his stressful job and move to the country side to find some peace of mind. Doing something with his hands is definitely working for him. The most he likes working with wood (chopping, sawing, building) and electrics. Anything he can be exact and precise. Also working with animals is good for him. Social etiquette, people talking round about and saying one thing and meaning the other are really hard for him to understand. Animals are straight forward and rewarding. He loves gardening but has no idea how to keep a garden. Simply tasks like weeding, pruning, filling a raised bed and cleaning a brambel batch are great outdoor work. It takes us time to figure what he likes to do. And every day is different. But the journey is the goal...
With his diet we are now gluten free and sugar free. The gluten make him cloudy in the mind and the sugar headaches. He has a lot of digestive issues but for some time now it works well with cooked buckwheat for breakfast instead of porridge. I bake all our bread, cakes etc and mostly we avoid shop bought gluten free products.
As a hobby he chose photography and he puts a lot of effort into one picture/project. He studies light and shadow and many other aspects of this art. He has some social contact on FB with photography groups and permaculture groups.
These are the three main points in his approach to his version of autism to lead a content life. Daily job on our new farm, diet and creativity/social contact/art project.
 
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I'll be honest, I have issues with the idea of "treating" autism. My brain runs on a different operating system than most people's. That's not a disease, any more than Linux is a virus.

Yes, it's hard sometimes when I'm in a situation where everybody's brain is required to run on Windows, and my Linux brain can only pretend, and not always well. But, there are also times when my Linux brain can do things a Windows brain can't.

Even if it were possible to change my brain so it runs on Windows, I wouldn't do it. I'd rather just avoid situations that are Windows-brains-only, and focus on the ones where my Linux brain excels.

(I hope that made sense.)
 
Ellendra Nauriel
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(Edited because this was originally a reply to a post that has since been removed.)


I think I should mention, usually when I hear people talking about treating autism, what they tend to mean is "make people on the autistic spectrum think and behave like everyone else."

That's the part I have trouble with. The idea that people can, or should, be forced to fit someone else's idea of "normal".

I think if you swap "treating" for "living with", that would be a better way to deal with it. It does take some trial-and-error finding the best way to live with it. Until you find that, it can be incredibly frustrating.

I didn't know I was on the spectrum until well into my 20's. I spent my entire childhood convinced that something in me was broken, because I couldn't think like other people did, and nobody could tell me why. They just kept telling me to try harder.

I respect the fact that some people's ASD is a lot more extreme than mine, and therefore is harder to live with. I suspect that even then, if the right situation could be found, they would be able to excel. But it's possible that the things needed to create that situation haven't been invented yet, or if they exist they might be obscure enough that the chances of finding the right combination are slim. It's hard to say, because you don't really know what the right fit is until you find it.
 
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I've seen this idea that autism shouldn't be 'treated' -- it seems to be becoming popular recently, and honestly, it makes me cringe.  I'm the mother of an adult daughter with autism, and after forty years of dealing with her issues, she definitely needs treatment.  

It seems to me that people who say that autism doesn't need to be treated have not been dealing with severe autism.  I have a friend on the spectrum (my age) who has made this same statement -- but he's a college graduate, with a wife and a family and a career. He is fully functional even without treatment.

Let me tell you about my daughter.  (To be fair, she has many more issues, medical issues, not just autism.)  If I did nothing to treat her condition, she would be having screaming fits all the time; she would be up (screaming) much of the night.  Anything at all, or nothing at all, sets her off.  She would be basically non-responsive, 'off in la-la land,' seemingly unaware of what was going on around her.  She would need to be dressed, and pottied, and fed, every single bite, three meals a day.  She could get too hot, or too cold, without showing any sign of distress.  She could get dehydrated without asking for water -- I have to keep a close eye on her fluid intake, especially in hot weather.  She is more or less non-functional without treatment.  Granted, even with the best treatments we've been able to figure out (forty years of working on it), she still can't read or write or count higher than about three.  Like I said, she has other issues.  

So, how do I treat her, to keep her as functional as she is capable of being?  First, diet -- we follow the AIP diet.  It's meant to be a testing diet, with at least some of the prohibited foods being reintroduced eventually, and we've been able to reintroduce a few things, but she cannot eat peppers or tomatoes, wheat (or any other gluten source), or most seeds and grains even if they don't contain gluten.  

Second, supplements.  She takes a high dose of vitamin D3, which seems to be the most helpful supplement we've found.  I've tried quite a few other things, but never really saw much difference, but the D3 does make a noticeable difference.  (I take it, too, and have found that it has a prophylactic effect on viruses -- we don't catch them, or if we do, we barely get sick.  It wasn't until this current COVID thing that I saw anything 'official' about D3 being useful this way, but I had known about this for around fifteen years.)

Third, prescription medications.  She is taking TWO anti-depressants.  I hate that she needs these, but take her off them, and she's back to being miserable and screaming and not sleeping right.  Note:  getting enough sleep is absolutely critical for both mental and physical good health -- for the person with autism AND for the rest of their family, especially their caregiver.  WITH the anti-depressants, she still can't do 'normal' things like read or write, but she is a happy member of the family.  She is able to dress herself, feed herself, go to the bathroom by herself, happily entertain herself a lot of the time.  She'll pet the little dog, hold a newborn goat kid on her lap, sit with me and watch videos.  She decorated our little Christmas tree, and undecorated it a few days ago, after I mentioned that it was time to put it away again.  She makes little jokes (she doesn't communicate well, but she can talk -- when she is being treated -- and will use short sentences).  She asks for particular items for a meal.  She is interested in the world around her, and aware of it, and participating in it.  

Negative treatments include avoiding stress and avoiding too much sun.

There are tests and lists people can go through to determine if they are 'on the spectrum.'  I've taken a couple of those, and I'm 'on the spectrum' myself, although not as much so now as I would have been when I was young.  And, no, I don't need treatment for my 'condition.'  But you cannot just make a blanket statement about all people with autism, that it's 'just another way of being' and they don't need treatment.  Mild autism, such as I have, and some of you, does not need to be treated.  But the people like my daughter do need to be treated.  

That said, other than the prescriptions that my daughter takes, I follow all the rest of her treatments, and I have found that *I* function better and feel better when I do so.  Possibly even the anti-depressants would help me; I'm not going to experiment with those to find out.  

Something to be aware of is that there is a strong connection between a diagnosis of autism, and auto-immune diseases.  My daughter and I both have multiple auto-immune diseases.  She has lupus, vitiligo, Sjogren's syndrome, and celiac disease; I have psoriasis, celiac disease, Sjogren's syndrome, and probably fibromyalgia.  Our diet changes, while they help with the autism symptoms, were undertaken primarily because of the auto-immune diseases and the celiac disease.  Probably just about everyone who is 'on the spectrum' should be following the auto-immune protocol diet at least for a few months, with slow reintroductions of the prohibited foods to see if they cause problems.  In most cases you are going to find that gluten and nightshades will not be able to be reintroduced.  Some of the other prohibited foods may be (we can eat eggs and some dairy products, for instance.)

In addition to the auto-immune diseases, we recently found out that my daughter has spina bifida occulta -- hidden spina bifida.  She has none of the little 'tells' commonly seen with hidden spina bifida -- there is no little dimple over her spine, no patch of darker skin or tuft of hair growing over the spine.  She has trouble with her bladder -- if she could communicate better, we would probably have found out about this a long time ago, but at least we know now.  Now that we do know, I can see other things that have been going on with her her whole life that can be attributed to the hidden spina bifida, including an awkward gait and a seeming lack of sensation in her feet and lower legs.  Apparently around 12% of the population has hidden spina bifida, and it can cause a whole host of problems.  My twenty-year-old niece has it (and has had trouble with her bladder for a long time).  It might be worth finding out how many people with autism also have spina bifida occulta.  Spina bifida can cause mental and neurological problems, hormonal issues (premature puberty is one), and more.
 
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The word "treatment" means different things to different people

From my experience, it means adjusting things in one's life to make living in this world easier and more comfortable.  For example, when I lived with an elderly relative who kept falling, the medically prescribed "treatment" was to buy a new kitchen table that didn't have legs that stuck out.  The doctor came to the house.  The doctor looked at the lifestyle.  The doctor wrote the perscription.  We had to follow it or the old guy would have to leave.  We even got funding.  It was officially "treatment".  

 
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Back when I was in school to be a teacher, we had a big discussion on "disability' and "mental illness." Some things really stuck with me from back then.

(1) Diagnoses are tools to help people get the help they need to achieve the success they want in the society they are in. Someone might be perfectly able to achieve the success they want in a hunter-gatherer society, but not a modern American society. Some people in modern american society would be considered disabled in a hunter-gatherer society. So, we have tools to help them succeed where they are. And their idea of success might really vary. Someone might want to become a Doctor, and this might require a lot more tools than it would be for them to be a permaculture Gert living in the woods.

(2) The tools we use to help people with "disabilities" can vary GREATLY.
  • Perhaps the tool is a necklace to fiddle with to calm them down (I LOVE my necklace).
  • Perhaps it's going on a special diet like SCD (Specific Carbohydrate Diet) or AIP (Auto-Immune Paleo) to help reduce the amount they are overwhelmed by emotions and therefore help them be better able to cope (I'm usually really messed up and have a harder time staying calm and dealing with stimulus when I eat starches and non-fruit/honey sugars)
  • Perhaps it's giving them understanding of what overwhelms them and empowering them to remove those things from their life without guilt (is shopping overwhelming? Shop at times when there's less people and always go down isles the same way, and go with someone to help you manage surprise situations, and do all your shopping at a few stores a few times a month).
  • Perhaps it's medication to alter brain chemistry that might be causing the person to always be depressed.
  • Perhaps it's helping them be find their own description of success and achieve it. Maybe they'd rather live on 5 acres and work part time from home and make/grow/repair most of their stuff so they don't have to work as much (Can I get an Amen?) Success doesn't have to be a big house with a well-paying job. Success can be stability (that's what my parents aimed for), or creative fun (think traveling artists in their tiny homes or vans or boats)


  • You could call those treatments, or tools. To think back to the computer analogy--I have an old, slow, computer. I've learned that it operates differently than a brand new Windows 10 computer. But, I can get it to do everything I need it to do if I just don't have too many tabs open and reboot it every so often. I like my old Windows 7 computer. My husband's Windows 10 computer constantly updates things without his permission and it calls everything aps, and it's not as customizable. It's not a bad computer. It's better at certain things than others, and there's ways to manage it's weaknesses.

    I think people with autism really don't like the word treatment  because it seems to say that the person needs to be CHANGED to be a different person, and that who they are is wrong/bad. But, we can also claim that word "treatment"--like R said--to mean ways of managing and helping and optimizing things for the person. Treatment doesn't need to mean changing them--it can be tools to help them achieve what they want in the world they live in.

    (3) When we were learning about autism, I remember thinking, "Wow, that sounds a lot like me. It seems like these 'disabilities' are really just differences in people that, when in the extreme, make it harder for them to operate in today's society." Come to find out, when I then went to work in a school and got overwhelmed by way too much new stuff going on, that I was not as able to succeed as I thought I could. Perhaps, I had autism, and my family/school had always done such a great job of giving me the tools to succeed that there was no need to attach me to a label as a way of further understanding me so I could find the tools I needed to succeed in the way I wanted. My life growing up was very stable: we never moved, we didn't do a lot of extra-curricular activities or go on lots of trips. We kept things very simple. In school, the teachers would keep me in the same seat while everyone else had their chairs moved, and this really helped me concentrate and learn.  I figured out how to do school, and I succeeded. Now, as an adult, life is more complicated and I have a harder time achieving the successes I want, and so I search more for tools and techniques and ways that help me to navigate the world that I'm in. Using the term autism helps me to find people who deal with similar things and learn what helps them manage life. I find this very helpful. I don't want to be a different person--I just want to find a way to keep my house clean, teach my kids, grow my food, and be de-stressed enough that I can talk to people without putting my foot in my mouth.
     
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    Treatment/ nontreatment...

    We have 5 kids, between us. Of the 5, only one has ever been diagnosed - Aspbergers - which is no longer a 'valid' diagnosis, medically speaking. But, we have strong suspicions about another of our kids. Oddly enough the suspected one is my oldest, the confirmed one is John's oldest. My son's paternal uncle has also never been diagnosed or 'treated', but I often felt like I was in extreme danger, around him - and we lived with them, for a while, out of financial necessity. On more than one occasion, I locked myself and my son in my inlaws' bedroom, butcher knife, in hand, utterly terrified for our lives, because of violent, detailed, gory threats he made, and him being so much bigger than me. The reason he was never diagnosed or treated is a long story, and not mine to tell details, but boils down to fears on his parents' part. But, his symptoms are textbook, and there have been medical professionals who have confirmed my theory, based on information from me, other family members, and their own personal observations of him. My son is purely 'typically developed', by comparison, having only a handful of minor 'ticks', and some struggles in choosing his words, in serious conversation - there are so many to choose from, and he 'needs the exact one', in order to properly express himself - but, he doesn't come across at all, as 'slow' - it just sometimes feels like pulling teeth, to get him to talk about anything, and he does express himself well.

    John's daughter fell somewhere between the two guys, on the spectrum. She always struggled, and through many times in her life, John was the only one who could reach her, but she was sweet, funny, and loving, in addition to her struggles. Very shortly after she turned 13, it was as if something inside her just snapped. Suddenly, her teenage hormones and her autism were joined by bipolar issues, and a couple other things. The result was an eruption of frustration that manifested in the form of verbalized violence and threats of violence toward both herself and others. The sweet, funny, loving side went into hiding, only showing when she felt extremely safe. She was no longer welcome in the public school system. She was on meds, already, but this new twist threw us all for a loop. Those meds weren't helping, and new ones came and went, and all the while, this poor kid cycled through extreme highs and lows, the meds sometimes exacerbating her symptoms & often adding nasty physical side effects, other times turning her into a zombie-like state, sometimes having to take her off everything for a few weeks, to 'reset' her, and those teenage hormones on top of it all... We went through a couple years, like that. It was hell on earth, for all of us. But, once a workable protocol was finally reached, not only were we happier, but so was she. She enjoyed being able to function. We all enjoyed being able to go places as a family, without worrying whether her fidgeting might end in a total stranger nearby getting accidentally kicked or hit - again.

    All three of them are now adults and are unquestionably, highly intelligent. They all grew up very differently, and their functionality is drastically different. My son's never-treated 62yr old uncle lives in his slovenly, childhood bedroom, in such a stench it now to permeates the whole house. My son, the least affected, and untreated, is fine, other than his habit of vascilating between rambling and clamming up, and the ring he twists on his finger, when he is nervous. He almost finished college, but quit. John's daughter finished high school and trade school, is engaged, and is working on getting into her own place. She hates taking her meds - but, hates herself even more, when she goes off them. She prefers being able to think clearly, not feel suicidal - or homicidal, and feeling comfortable in her own skin, when she goes out.

    What all of this says *to me*, is that - like most everything else in the world that I've seen - it's highly individual, and so must the treatment - or non-treatment be.  There really isn't a 'one-size-fits-all' or even a 'one-size-fits-most' approach that will work.


     
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