Advice please

It sounds like you haven't done anything wrong! It's amazing you've been kind and respectful about her requests.

I had similar issues with language when I was young (I still do occasionally). I had trouble expressing the vivd imagery in my head, as every though is very visual. I had trouble identifying or finding the word for exchanges, emotions, objects, etc. Now when I get stuck, I just start describing the entire scene in my head. Because I had difficulty building my vocabulary, it was hard to follow nebulous cliches or when someone else wasn't specific and direct. Even now, in my 40s, there will be moments when a word becomes nonsense or I need to double check I'm using the correct term for the definition I'm attempting to convey. 

My mind is a bit like a library - things are catalogued but not orderly. There are volumes of things I'd love to just delete. I intake everything and all at once, so it's easier when my surroundings aren't too chaotic or I can focus on doing one task at a time. If there's too many humans, too much noise, several things happening at once, it's a bit like being poked at from every angle with everything demanding my attention or constantly being interrupted. I've learned to focus on one thing to completion if possible or I can even become a safety issue! 

Crowded locations can still bring me to a puddle of tears on a rare occasion, when I was young I'd just cry all the time out of frustration or when asked a question where I had images but couldn't assign words to them. As I gradually learned to create my own psychological and physical space, exit when overwhelmed, create my own aesthetics (sensing much more than most), assign proper emotional and physical boundaries, make lists, etc., it definitely eased the frustration. And learning logic helped a great deal - the system of communication / argumentation. However, it took a long time to expand my use of language.  I think in my mid 30's the melt downs stopped but I wasn't well parented. Although, I had a friend throw a massive birthday for me at 35 and I think I retreated in to a dark room alone several times during the night to just breathe and regroup. That helped get me through the night. The friend who threw it felt offended a bit but years later realised I was autistic & that changed her memory and her feelings about it!

You sound like a supportive parent. At times I had wished my mother would treat me like a complete stranger & assume she didn't know me. She was always more open and (even if it was pretend) seemingly gave humans she didn't know room to express, or would genuinely seek to understand them. My son now is a bit more like me. I've taught him how to tell me when he's overwhelmed and stressed I just allow him time decompress. He knows I'm always available to help however I can. Just being available and seeking to understand is incredible parenting! Why not cake for breakfast? 

Hi

Thank you so much. I don’t care if my daughter had five heads she’s my daughter I just want to understand what more I can do to help her. She is struggling with lots of things at the moment. She has always struggled with communication. She keeps reverting back to a toddler with her behaviour at the moment that is difficult for me to understand why, she s 13. She has health issues, doesn’t sleep much, eye problems, really bad excema I think due to stress, anxiety and panic attacks, she has some sort of seizure when she does sleep and she has started questioning her identity. Again boy, girl I don’t care I love her and that won’t change. I will always be there for her and support her but I need to talk about things I am struggling, my daughter seems like a completely different person and this is very hard and if I am completely honest it’s upsetting at times and I am shattered. She isn’t of course she had been masking all her life and got to the point where she couldn’t anymore I think. As I have said this is all new to me. 

You also sound like an amazing parent and very supportive of your son. It must of been hard not having that support from your mum. I know things were a lot different when we were children although it shouldn’t have been. Home should be every child’s safe place and free from judgement and to feel accepted and loved no matter what  

it’s very good of you to share I am so keen to learn as much as I can to not only help my daughter but to understand more to help my husband and son understand too. It can be very difficult when my daughter doesn’t communicate. 

No cake she has been very withdrawn today so I will try again tomorrow 

I am more than happy to share things which I experienced! If it helps? 

Food sensitivities: This is seemingly common for most Autistic individuals. Biological reactions to food sources are simple chemistry. Think of it this way, a squirrel can digest nuts and other natural items humans cannot. Cows like grass, and cats too, but only when ill. Humans however, cannot digest it very well. Now when you break apart various human DNA types, the same is discovered. Some take well to cows milk, others cannot. Some can digest grains, others cannot. It's fun to look into blood type 'diets' or what might be good for my DNA to start. But this is not a choice, I must be mindful of my 'diet' lest I end up in hospital. What I've discovered is I cannot process gluten and even ancient grains cause pain. I cannot process legumes very well unless they are low on the lectin scale. So peanuts, yes. But not both peanuts AND hummus. 2-3 Brussels, OK. But any more, combined with other veg and I will experience heart-attack like pains. The 'diet' I am mindful of sticking to resembles something a bit opposite of the Vegan diet. I also take supplements as advised by various nurses at the NHS. Probiotics, are helpful too.

Being overwhelmed by surroundings is an issue with Vulnerability. According to a psychoanalyst Jacque Lacan (who studied under Freud), he apparently theorised Autistic individuals have difficulty creating Defence Mechanisms: https://www.simplypsychology.org/defense-mechanisms.html - it could stand to follow that Autists feel vulnerable MOST of the time, due to the inability to properly 'numb' themselves to the world around. Defence Mechanisms can be healthy, they can be unhealthy. But either way, daily life for me used to be an overload on my senses. The senses are supposed to be tools for calculation. I would also suggest that the response of stimming can be a way of using Rhythm to create a centring or stability. Many animals use a display of rhythm to ground their chaotic environment. But this is a personal theory of mine I'm still working on. 

Light: Many LEDs emit one wavelength of light like a sharp pin, or a fast flickering or blue emission I cannot properly block out. I've switched every light in my house (except safety or hall lights) back to halogen or incandescent. If the hard wiring is LED, buy lamps. Blue lights have also been proven to cause permanent retina damage in infants and young children. 

Sound: Electrical appliances and wiring generate tones. This sound designer uses a particular mic to collect these sounds and turn them into 'Art'. https://jezrileyfrench.co.uk/electromagnetics.php but imagine if you could hear this on a daily basis? It might create frustration. Curtains and rugs, fabrics which deaden sound in her space can help. Sound is also used for military purposes, as torture. This is good to keep in mind.

Scent: Many chemicals in the form of 'scent' are added to household cleaning agents. Again, Humans tend to block or ignore the warning signals the brain is sending them regarding these. Candles, Plug-Ins, toilet bowl cleaners, they're everywhere and they are not safe to inhale. These manufactured scents are entirely different than pure essential oil, which can be added to water and spritzed about if you really love Lavender for instance. Dr Bronner's Soap or EcoZero are great alternatives for cleaning. 

This list is not exhaustive. When one lacks the ability to numb oneself, or defend oneself they're left not feeling, but actually vulnerable. And no one can grow, not even plants when subjected to the elements. Ideally, start by creating an aesthetic for her, so the space she calls home is she can 'breathe'. There is surviving and then there is thriving. Once you turn her home surroundings and internal biological structure into a safe and peaceful environment, she can begin to thrive. 

In my own journey, I read the Artists Way, I learned Logic, I took a few acting and improv classes (so long as I didn't have to perform). I learned proper boundaries (a rabbit hole of googling) and how humans use power with and against each other. The more understanding I had regarding these psychological tools, the better equipped I became to understand the systems of engagement. This may seem like a lot, but eventually the best hunting about for tools I did involved learning the difference between creating boundaries vs. abuse. Understanding Ethics became my personal choice as an active 'defence mechanism'. 

Here's a lovely human to follow: https://www.instagram.com/thearticulateautistic/

Once she can help create good surroundings, feel safe and free to learn and grow, she may be slightly different, but she will have remarkable advantages which Neuro-Typicals might be envious of. :) x

I am more than happy to share things which I experienced! If it helps? 

Food sensitivities: This is seemingly common for most Autistic individuals. Biological reactions to food sources are simple chemistry. Think of it this way, a squirrel can digest nuts and other natural items humans cannot. Cows like grass, and cats too, but only when ill. Humans however, cannot digest it very well. Now when you break apart various human DNA types, the same is discovered. Some take well to cows milk, others cannot. Some can digest grains, others cannot. It's fun to look into blood type 'diets' or what might be good for my DNA to start. But this is not a choice, I must be mindful of my 'diet' lest I end up in hospital. What I've discovered is I cannot process gluten and even ancient grains cause pain. I cannot process legumes very well unless they are low on the lectin scale. So peanuts, yes. But not both peanuts AND hummus. 2-3 Brussels, OK. But any more, combined with other veg and I will experience heart-attack like pains. The 'diet' I am mindful of sticking to resembles something a bit opposite of the Vegan diet. I also take supplements as advised by various nurses at the NHS. Probiotics, are helpful too.

Being overwhelmed by surroundings is an issue with Vulnerability. According to a psychoanalyst Jacque Lacan (who studied under Freud), he apparently theorised Autistic individuals have difficulty creating Defence Mechanisms: https://www.simplypsychology.org/defense-mechanisms.html - it could stand to follow that Autists feel vulnerable MOST of the time, due to the inability to properly 'numb' themselves to the world around. Defence Mechanisms can be healthy, they can be unhealthy. But either way, daily life for me used to be an overload on my senses. The senses are supposed to be tools for calculation. I would also suggest that the response of stimming can be a way of using Rhythm to create a centring or stability. Many animals use a display of rhythm to ground their chaotic environment. But this is a personal theory of mine I'm still working on. 

Light: Many LEDs emit one wavelength of light like a sharp pin, or a fast flickering or blue emission I cannot properly block out. I've switched every light in my house (except safety or hall lights) back to halogen or incandescent. If the hard wiring is LED, buy lamps. Blue lights have also been proven to cause permanent retina damage in infants and young children. 

Sound: Electrical appliances and wiring generate tones. This sound designer uses a particular mic to collect these sounds and turn them into 'Art'. https://jezrileyfrench.co.uk/electromagnetics.php but imagine if you could hear this on a daily basis? It might create frustration. Curtains and rugs, fabrics which deaden sound in her space can help. Sound is also used for military purposes, as torture. This is good to keep in mind.

Scent: Many chemicals in the form of 'scent' are added to household cleaning agents. Again, Humans tend to block or ignore the warning signals the brain is sending them regarding these. Candles, Plug-Ins, toilet bowl cleaners, they're everywhere and they are not safe to inhale. These manufactured scents are entirely different than pure essential oil, which can be added to water and spritzed about if you really love Lavender for instance. Dr Bronner's Soap or EcoZero are great alternatives for cleaning. 

This list is not exhaustive. When one lacks the ability to numb oneself, or defend oneself they're left not feeling, but actually vulnerable. And no one can grow, not even plants when subjected to the elements. Ideally, start by creating an aesthetic for her, so the space she calls home is she can 'breathe'. There is surviving and then there is thriving. Once you turn her home surroundings and internal biological structure into a safe and peaceful environment, she can begin to thrive. 

In my own journey, I read the Artists Way, I learned Logic, I took a few acting and improv classes (so long as I didn't have to perform). I learned proper boundaries (a rabbit hole of googling) and how humans use power with and against each other. The more understanding I had regarding these psychological tools, the better equipped I became to understand the systems of engagement. This may seem like a lot, but eventually the best hunting about for tools I did involved learning the difference between creating boundaries vs. abuse. Understanding Ethics became my personal choice as an active 'defence mechanism'. 

Here's a lovely human to follow: https://www.instagram.com/thearticulateautistic/

Once she can help create good surroundings, feel safe and free to learn and grow, she may be slightly different, but she will have remarkable advantages which Neuro-Typicals might be envious of. :) x

One of the best things I did was to spend time engaging with more natural effects and trying things out. It can take a bit of searching but here's some elements I discovered I liked.

More immediately (if you haven't already) I might change the lighting in her room. Go on an adventure. I might buy 4 different types of bulbs. Use them all, but allow her to work out which is her favourite: Maybe 2 GLS, 40 - 60 watt 400-750 lumens (I wouldn't go higher, lumens basically mean how bright it is), and also maybe a few low watt halogen GLS (really amazing with opalescent encasements). And then I might buy a salt rock lamp. Oddly, the glow through the rock is SO relaxing (you can use an LED or halogen for this as it's completely covered).

For changing her surroundings, I then might just buying a few magazines or peel through Pinterest together for colour palettes. Again, spend time thinking about colours. If you go for a walk in the woods, which colour combinations are appealing? And then again - indulge your senses with them, really look at a flower and work out how many colours it has. It's like going on a sensory adventure! Maybe after a few weeks, you can begin to think about repainting the walls, finding a new lamp fixture or add simple natural elements like a row or terrarium of rocks on a window sill. Assign Time to spend just daydreaming - this kind of engagement with visual and imagination can be quite useful as she gets older. 

Then maybe search around for 100% cotton sheets. The higher the thread count, the softer they are. I only have 2 sets of quality sheets. I keep them till they wear out which takes about 5 years. If you can afford it or save up for it, I would even make sure the Duvet is natural, either wool enclosed in cotton or down. I really like Devon Duvets, they're a small and ethical company, but one of many. Polyester duvets are basically plastic, not really good for spending 1/3 of my life in. 

If you can, a mattress topper or a natural mattress are incredibly beneficial. Just a topper to begin, again, depending on budget. Note that Eucalyptus (Tensel) will keep the body cool. Wool will keep a perfect temperature. Understanding the chemical reaction of our biology and other materials is a rabbit hole :) 

Cleaning! If she has carpet, once every few months sprinkling bicarbonate of soda all over the floor and vacuuming it up is really helpful! I also spritz my room with a home made solution of water + several drops of lavender, bergamot and eucalyptus. Holland and Barrett have pure essential oils, and it could be useful to allow her to smell a few of them before buying. Typically these aren't intrusive as they're not human-made chemicals, just natural. Neal's Yard is a good site to have a look at for more information.

As for eating, I'd consult a health care specialist. It appears humans with gluten issues don't need the same amount of fibre that humans without gluten issues require, so it's not a quick fix, there's strange things to be mindful of. This is another rabbit hole! Food sources are interesting. I find I don't really desire bananas. When I looked at the vitamins they provide, the minerals/vitamin content of a banana is a bit similar to the potato. And I eat a good deal of potatoes, so - fascinating! Also, oranges. I love lemons, and after squeezing a whole one into water, don't really desire an orange. Lemons are sometimes the only way I can digest things, so I have half a lemon almost every night. One can actually overdose on vitamins, interestingly. You could look at what she enjoys eating. The nutrition content (ignore calories!!) is important. Some dark chocolate contains a good amount of iron. Also helpful to note :)

This method of creating and delegating time to think-through and research and imagine and hunt/gather has become a useful method for me in life. Emails are difficult sometimes, I might start something and come back to it a week later. I have this driving need to finish everything I start, but now that I allot appropriate time to think through things, I find much less regret. This is useful for relationships, for problem-solving. I feel it fits a desire for exactness and soothes potential chaos. This method generally makes my life a little more fluid, though it takes a good deal of patience and perseverance, but that is easy when I am allowed to sit with a sensory experience and enjoy it. However, I now experience far less frustration & I find my sense of hyper-focus has become a useful skill, well disciplined over time. 

Your allowing her to move at her own pace is excellent mothering. If she can emerge from her teens as someone who's been afforded time to learn to craft-fully engage her senses through exploration, and also learn how to identify and navigate around elements harmful and intrusive to her senses, she'll feel much more grounded and perhaps be able to then find and focus on talents she didn't know she had. She'll be better suited for society in general!

Oh, I think the woman I mentioned is on Twitter, but doesn't use it much. Could be worth signing up! x

Hi

Yes that would be great thanks. That’s really informative and I think I should definitely look into food intolerances. My worry is she eats a very poor and limited diet so if I have to take away what she does eat or change it that’s not going to go down very well with her. I will definitely try some natural non smelling cleaning products too. I don’t have Instagram but I have Twitter do they have a Twitter account I could have a look at? 

I want to create a sensory place in her bedroom but I don’t know where to start any ideas?

Thanks