Lived Experience Forum

[creative_writer]

@Jynx I was thinking along the lines of a half day at home. I’ll need to catch up a full day this week, but it’s okay, I have some leeway in time between placement finish date and second semester. Might be the best compromise. I’m probably going to be up tomorrow morning, I’ve been naturally waking up. I like having stuff to do. This is considering that I feel okay enough tomorrow morning.

Yes, the clicky ones get annoying. I have one of the standard pens, I play around with the lid and pen. Might try to look for one of those fidget pens.

One of my supervisors has lamps in her room. I prefer those too. She’s the one who noticed I was ND. She also has traits and has family members on the spectrum. Ooh I like lava lamps 😀. I hate flurorescent lights so much and LED headlights so much. I ended up with a bad migraine attack the first day and lots of sensory overload that I was actually feeling suicidal. I’ve learnt my lesson and have become more mindful. Didn’t make the connection between heightened mood states and light before.

I was impatient just a while ago, my sister was talking and I wanted to say something to my mum. I’m more likely to show that type of behaviour at home than in public. It’s not socially acceptable to talk over people.

I feel like my mind is full of tangents, particularly right now. I’m still learning to manage the scatteredbrainedness, intrusive thoughts still do pop up.

This is a bit off topic. Not even sure how I came to here. I’m actually recognising some of the strategies my psych spoke about in therapy on placement. It’s been a good refresher, but things take time

[Jynx]

@creative_writer soz was just on PGC!

I'm glad to hear that it's something that is so motivating! I suck at mornings haha but having diversity in our neurotypes is a good thing to my mind!

Maybe Kmart has some good fidget pens! They've definitely cashed in on stim toys lately, much to my wallet's dismay 😂 I might even go look tonight - will report back! 

Yeah it's pretty bonkers how much our sensory sensitivities can impact us! Mine is moreso sound than light, and my misophonia can get really bad sometimes. I used to work with a guy who would habitually make a smacking noise with his lips, it would drive me up the wall. It's weird that when a sound triggers my misophonia, my bodily reaction is pure rage. I'm glad you're becoming more attuned to how your body responds to these things, so maybe next time if you get smacked by those suicidal thoughts after a sensory overload day, you'll know why it's happening and maybe it won't be as scary. 

Yeah the tangents can be both incredible entertaining and fun to follow (especially when chatting to other ND folk) but also can mean a complete lack of focus. So many fun little paradoxes like that... like my focus is really all or nothing, same with my emotions, my levels of interest. Makes life an adventure I tell you what! And not always the fun kind 😬😑😅

Things do indeed take time. But I do absolutely recognise and want to commend you on the work you're doing, it's really inspiring 💜

[creative_writer]

@Jynx I am a morning person by nature. I start getting tired during the late afternoon.Once the sun is down, I feel like I’m meant to be asleep. I do take meds that put me to sleep and wear amber glasses to block out the artificial light.

Fidget toys help a lot. It’s way better than rubbing my hands. I don’t rub as much anymore, I admit it wasn’t healthy but have still found myself doing it time to time, even consciously.

Noise can bother me too. I personally don’t like traffic, construction or scraping noises.

Going on tangents has its fun and not so good moments. It also depends on context. Like I wouldn’t want to be talking about kitties during a workplace presentation.

Sometimes I don’t know if I’m doing enough. Does one ever get to the stage where they start feeling comfortable around people to 100%, at least with supports such as psychs and pdocs

[creative_writer]

I think I’m realising the traumas I’ve experienced over my lifetime have resulted in me not feeling like I belong and I’m not safe. Whenever I am in a social situation, I often feel like I don’t belong and I’m not safe. I fear rejection brings it triggers “I don’t belong”. I don’t feel like I even belong in my family even though I can say I’m close to them. I also fear being exploited too because I feel like I’ve been exploited. I think social anxiety is a trauma response. Now I have this information, I don’t know what to do with it

[Jynx]

Howdy @creative_writer happy saturday to ya 😊

Haha re: tangents, you nailed it - I do absolutely have to suppress/compartmentalise certain tangents even though my brain gets excited to share them. Gotta pick our battles eh? 

Sounds like you're a very sun-oriented person! I like the theory that we evolved to have morning ppl and night ppl so that some of us can like, be on watch/complete certain types of tasks during the hours of darkness as well as those who are more productive during the day. I like the fact that my brain is most active/creative from around 1am-3am, it always feels calm and quiet. I even love late night drives - watching the street lights flash past and there's no one else on the road, ahhh 😊

Re: comfort around pdocs and psychs... I mean I've always felt a certain degree of discomfort I guess, mainly I think because of the nature of the relationship. Like there's always gonna be a bit of a power dynamic at play cos one person is paying the other for something to happen. With friends, I feel I can measure comfort levels by how content we can be to sit in silence together, i.e. 'parallel play' as its called in ND circles. 

As for your realisations - I think it makes a lot of sense. If there's been a repeating pattern that emerged in both family and in other social situations, your brain has learned to be wary of others who might ostracise or exploit you. Insight is often the first step towards healing, and maybe for right now it's just about processing this info, and in time hopefully the best next step will become more clear 💜

[creative_writer]

@Jynx happy Saturday to you too 😊💖

Once I had a distant cousin come over, our conversation was intense, we were also going on tangents. It was fun. I don’t usually have that much fun in social interactions with many people.

I think everyone is different. Some people hate mornings and some hate late nights, both are completely valid. I do have light hypersensitivity, I try to keep my circadian rhythm related by natural light as much as I can.

Maybe it is the nature of the relationship. Maybe it’s also that many of us coming into therapy have trauma histories. It’s hard to ever feel fully safe, even around safe people.

I think I’ve struggled to make sense of what’s going on in my mind for a long time. I’ll have this sense of not belonging and feeling lonely, it probably does tie into childhood bullying, emotional neglect and bad experiences with reaching out for MH support from even professionals. I’ve found it hard to explain. Like I’m not afraid of ending up alone, but I hate being around people and feeling lonely. Maybe masking is what is making me so lonely. Though I find being genuine and being myself very difficult. I’ve created social rules in my mind that guide my behaviour with others. I just want to be myself but too scared to

[Jynx]

@creative_writer aww do you still hang out with that cousin much? Sounds so wholesome!

Yeah my partner is super light sensitive too, I have to be cautious about turning on lights around them or I can acidentally like, 'flash-bang' them leaving them reeling. All just fun different flavours of ND, eh? 

Yeah having repeated experiences of feeling shut down, ostracised, or rejected, would definitely leave a mark. We're experiential learners, and so sometimes to unlearn some patterns, we need to have repeated experiences of safety and acceptance to help teach our brains that another way is possible. 

Masking can certainly do that... like I've learned over time that the more I am unapologetically myself the more I've found acceptance and comradery within my social circles. People can kinda sense when we're being inauthentic, and trying to mould ourselves to fit our idea of what we think other people want of us... well in my eperience it doesn't work because we can't ever really know what people want of us, and when we try to pretend to be something we're not just to please others, it backfires because even if it is what they want, they can sense we're being inauthentic to achieve it... if that makes sense. 

Curious about these social 'rules' you've come up with, if you think it could help to share? 

[creative_writer]

@JynxI actually haven’t spoken for a while. She doesn’t live here, she was visiting her dad in Australia, she lives overseas with her mum (her parents are divorced).

Light can feel overwhelming for some of us NDs. Light is probably my most sensitive out of my five senses.

I feel like I haven’t met many people at the same brain wave length as me. Not sure how else to put it. You probably get what I mean. Not many people are good listeners either, they start suggesting things that won’t even work for you. A lot of the time you don’t even ask for suggestions. I feel many people don’t want to see you hurting so jump to bandaid solutions. Like talking to my mum and sister about my MH more is not going to be helpful. Being on holiday may distract me, but it’s not going to take away my mental illness. You can’t go on holiday all the time either, it’s just not viable. I rarely come across people who click. Clicking isn’t just adequate, you need some proximity too. It’s difficult when someone lives on the other side of Australia for example. Adulting is also hard, so many things to juggle.

Social rules like not being a restless mess outside the house, I can’t do any of that pacing and must remain seated. Maintain eye contact. Try to act okay when I’m not, express socially desirable emotions. Not interrupt people like I do at home. That kinda stuff. Essentially act NT

[Jynx]

@creative_writer worth reaching out and refreshing your connection? I know you were probs just giving an example but idk, when we find those people with whom we resonate, can be good to stay connected ya know? 

I do absolutely get what you mean! I call it the vibe, or being on a similar wavelength... and tbh I find it only really happens with other ND folks for me. I don't actually think I have any NT friends 🙃 

And yeah, I think you nailed it with the notion that folks just don't like to see us hurting. It's why when someone comes to me for support, I'll ask them 'do you want suggestions or just to vent?' I wish it was a more common social norm to do so hey. 

Gotcha. I guess for me it's a bit of a 'pick your battles' type situation. Like some situations (work, formal occasions, some family occasions) do warrant a certain degree of masking, but if it's a regular social situation, I am a big pile of chaos - tangents, special interests, direct communication haha. I find it to be a helpful filter actually - anyone who doesn't respond well just isn't really my kinda person, and not someone I need to impress or invest time and energy into. It can be hard though, cos there's all sorts of 'unspoken social rules' we're taught growing up. And the media too, big influence. I try to remind myself that the majority of dialogue in film and tv is written specifically to create drama and tension and drive the plot, and so ought not to be something for me to model my own social habits on. 

There's a fantastic book, I personally haven't read it but have heard great things - it's called 'Unmasking Autism' and could be a helpful read as you explore this aspect of your life?

[creative_writer]

@Jynx, it is good to stay connected, but staying connected on social media can be hard, but sometimes it’s all that we have. I’m not sure if she was ND herself, but I do believe her young cousin is on the spectrum.

I feel like some people aren’t on the same emotional wavelength. Maybe it’s about maturity too. My experiences as being the oldest sibling and trauma has made me grow up faster. In order to survive, one must grow up. I’ve grown up more than 10 years in the last 10 years of my life. Some of those old friendships do not feel the same anymore.

It is true some situations will require masking but it is exhausting if you do it all the time. I would be lost if I could not pace around in the house and move. Paternal grandma thought my excessive movement (pacing) as a kid was weird, but so what. Even NT kids move. Kids move, it’s normal. I don’t see my paternal grandma often though.

Might look into that book. Maybe it’s about unmasking a bit more in safer situations