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AIBU?

To ask what it's like to be neurodiverse?

117 replies

drspouse · 29/07/2021 12:27

My son has ADHD and some sensory difficulties. To some extent I can understand how the sensory difficulties feel to him as I know just what it's like to have a reaction to suncream that I'm allergic to, or to put on shoes that are too tight, and that must be what he feels like with all that kind of thing.
I was talking to a colleague the other day about our children as her DD is on the pathway for ASD diagnosis. She mentioned that she herself has a diagnosis of ASD and talked about our DCs sensory issues and her own sensory issues.

But a lot of the other difficulties that my DS has and that my colleague has are a bit of a closed book. I didn't like to ask my colleague about other issues and positive things about being neurodiverse, so I thought I'd ask Mumsnet....
Obviously this is MN and you don't owe me... But you also don't have to work with me!

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FortunesFave · 29/07/2021 12:36

Hannah Gadsby says it's like being the only sober person in a room full of drunk people and to me that makes sense. I have a diagnoses of ASD and a lot of the time I am genuinely perplexed by other people.

One thing I never get is the way people hang around after a meeting at school and want to chat with one another.

I can't imagine what they talk about...or why they'd want to.

I struggle badly in certain environments and one of them happens to be any sort of government run building...schools, colleges, hospitals, doctor's offices etc.

I can never leave fast enough.

Also, this sounds bad I suspect but I find 99% of people incredibly boring. I don't particularly want to talk to them.

None of them share my (probably weird) interests and I don't share theirs...so why pretend?

I do have some physical aversions and they're all weird as well. I can't look at or be near some things...but that's related to OCD in all likelihood and I've never had that diagnosed.

I can't bear being close to strangers...on a train or bus or in an office for example. I've loved wearing a mask so nobody sees my whole face and I don't see others'.

I do struggle recognising some humour though...but I love good comedians and watch stand up and sitcoms.

An example of humour I recently didn't get was a colleague discussing ageing with me...and how it affects your social life..and she said "For a while it's all marriages and then it's all funerals..." and she was joking but I didn't see the humour in it and said "Oh no...lots of people get married in their 40s!"

DH explained later she was joking...or being lighthearted. I believed her. I thought she thought that we'd only attend funerals from now on.

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elliejjtiny · 29/07/2021 12:44

It's hard. I have dyspraxia and I find "normal" things really difficult like walking without tripping over my own feet. When my son took an overdose I didn't realise because my brain doesn't make the calculations quick enough and that really scared me because if dh hadn't been there he would have died. I always think I'm not good enough.

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tiredanddangerous · 29/07/2021 12:50

Difficult. I have ASD and I guess the biggest issue for me is anxiety. I'm always on the edge of panic and it's pretty horrible to live with.

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Cuddlyrottweiler · 29/07/2021 12:52

Kind of a difficult thing to answer broadly. What's it like to be neurotypical?

it's like being the only sober person in a room full of drunk people
This is such a good description.

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PinkmugofTea · 29/07/2021 12:59

It’s very very hard to explain as one persons account will vary to the nexts.

Personally for me I could try to explain. How I feel is like if a NT person did the following

-start off with little to no sleep so you’re exhausted, make sure you get dressed but everything has to be the wrong size. Your shoes are too small so they hurt. Clothes too tight so every band digs in and you feel every bit of bunched up or scratchy material.

-imagine you feel sweaty yet cold, itchy and any dry skin is drier than it’s ever felt and you can’t stop thinking about it. You keep getting palpitations too.

-turn the tv on but too high. So its annoying And make sure everyone knows to talk at you too near and too loud and all at once - it’s hard to them concentrate on one person and if you try to join in you keep losing the thread of any conversation and repeating yourself till you’re so overwhelmed your brain stops communicating with your mouth

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Sofuckingsad · 29/07/2021 13:00

I have ADHD and dyscalculia. I'm constantly worried I'm going to make a stupid mistake - like I often get train and flight times wrong, no matter how often I check them. I've had a lifetime of getting times wrong, forgetting and losing crucial items, blurting out inappropriate comments etc and it really does a number on your self esteem. That's the number one thing I would work on with your son - keep his confidence high and help him devise strategies to manage any recurring issues. On the flip side, I love the speed that my brain works at and can't fathom people who get 'bored' - I can always find something interesting to do, or some new project to get absorbed in. There is a series of videos on youtube called 'how to adhd ' - the woman who presents them is very hyper but she has some genius tips for managing, and also provides good insight into how the ADHD brain works.

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Sofuckingsad · 29/07/2021 13:02

For me, ADHD is like being the only DRUNK person in a room of sober people. Grin

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Pipare · 29/07/2021 13:03

Exhausting and difficult. Everything is a faff, from choosing clothes to choosing food to everything in life and if i get it wrong or feel like I have, I have a meltdown, which feels embarrisinf as an adult, which leads to the cycle starting again.
If I could click my fingers and remove the autism I would.
The pp saying its like Being the sober one in a room of drunks is a very good description for me.

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SarahAndQuack · 29/07/2021 13:04

I'm dyspraxic/dyslexic with a lot of memory/co-ordination issues and it's fascinated me watching DD (who I suspect is neurotypical, or at least not dyspraxic) growing up. She is bemused by things I can't do that seem obvious to her - I can't look at her lego instructions and help her; I don't see where to move things or put things. She's been more spatially aware than me since she was tiny; she's four now and she is just starting to realise it's odd that she can work out how to put together flat-pack furniture before me, or she can see where the missing piece in a toy goes before I do.

But I also get frustrated when people seem not to make connections that are obvious to me - I am good at a sort of scattered way of thinking that lets you jump from one thing to another easily. It's been a lifesaver since having DD, as I don't think the exhaustion/constant interruptions you get, bother me as much as if I were NT.

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drspouse · 29/07/2021 13:06

It’s very very hard to explain as one persons account will vary to the nexts.

I'm sure, but this is helpful and interesting.

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Saucery · 29/07/2021 13:09

Chris Bonnello is fantastic for explaining autism/neurodiversity and celebrating strengths, not weaknesses.

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BriannaDannaDingDong · 29/07/2021 13:13

@PinkmugofTea

It’s very very hard to explain as one persons account will vary to the nexts.

Personally for me I could try to explain. How I feel is like if a NT person did the following

-start off with little to no sleep so you’re exhausted, make sure you get dressed but everything has to be the wrong size. Your shoes are too small so they hurt. Clothes too tight so every band digs in and you feel every bit of bunched up or scratchy material.

-imagine you feel sweaty yet cold, itchy and any dry skin is drier than it’s ever felt and you can’t stop thinking about it. You keep getting palpitations too.

-turn the tv on but too high. So its annoying And make sure everyone knows to talk at you too near and too loud and all at once - it’s hard to them concentrate on one person and if you try to join in you keep losing the thread of any conversation and repeating yourself till you’re so overwhelmed your brain stops communicating with your mouth

This. This is absolutely perfect.

Overwhelmed. Exhausted. All the time.

The only time I can properly relax is when I am completely alone.
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QueenofBrickdon · 29/07/2021 13:15

@PinkmugofTea that's exactly how it is for me too.
I absolutely cannot cope with more than one source of sound at once. It feels like my brain will explode and I literally cannot speak.
I'm on the waiting list for an Autism assessment and take medication for anxiety which helps a little.

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StupidNC · 29/07/2021 13:16

@PinkmugofTea has described it accurately for me (ASD). But we are all different, e.g. someone upthread said they liked a mask. Hate my mask. I wear it because I understand it's good for public health and I don't want negative attention but due to it being overwhelming it turns me from a very smart, capable person into someone incredibly slow / incapable, because my brain shuts down and it takes forever to process input.

Also YY to finding a lot of people incredibly boring. I run through a list of approved conversation questions, mostly remember to ask follow-ups (I have really good masking skills and a v good memory, so I've learned conversations by rote), but I have zero interest in it, including in a lot of family members, which people are judgemental about. When I'm tired, or overwhelmed, it's very difficult to mask properly. And the pandemic and only being with DH 24/7 (who is very relaxed, so I don't mask) has really ruined my social skills as I work in a very solitary job so I only have periodic meetings.

Conversely, a lot of people I think find me boring (from what I've been told) because I don't know when to shut up and I can't tell when they've had enough. Body language is like other people speaking German when you only speak English - you might get the odd word, or you might think you understand the gist, and you try and respond accordingly. Sometimes you're right, sometimes you've completely misunderstood and you offend, or they get cross, or you lose a friendship, or have a complaint made about you, etc. Feels like a lottery, and practice is exhausting and not always fruitful. In a previous job I would spend all Saturday in bed because I was so physically tired from dealing with people, but I only worked a 35-40 hour week.

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daisycottage · 29/07/2021 13:17

I have autism and adhd and I feel like an alien amongst other people.

I feel constantly on red alert and can't relax. Dealing with the sensory overload is very tiring and I have to seek quiet time for myself throughout the day. My brain works overtime and I over think everything, again, this is tiring.

I have to stick to my routines otherwise I feel stressed and out of control. My anxiety gets out of control if I'm near other people and I have to take meds to deal with this. When I go to a supermarket it's very loud, bright, overcrowded and chaotic. I feel panicky and want to run away. I feel like people are staring at me and are angry with me.

My adhd means I'm very physically restless and driven and my mind can't cope with boredom or settle on anything for very long. I can't sit and relax, read a book, watch a movie etc. I get depressed because I can't relax and switch off.

My autism means I can't relate to neurotypicals and I can spot when they've noticed there's something different about me and I feel embarrassed. I can't get my thoughts out in a coherent manner and I do get frustrated very easily and can get angry. If something goes wrong I can have a meltdown. I feel out of my own body and just so distressed when this happens.

To me, neurotypicals are like small children who just don't understand what the hell you're on about and who don't want to cooperate with you anyway. I feel extremely lonely and not part of society and just hover around the margins trying to avoid people. Interaction is exhausting and I hate small talk because, to me, it's irritating, pointless, uses my energy and I'm just not interested.

Being autistic is like suddenly being dumped in a foreign land where nobody speaks your language, you don't know the culture or customs and where the locals all hate you for some inexplicable reason which you have no hope of ever discovering.

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Meruem · 29/07/2021 13:54

I have a lot of sensory issues. I don’t like taking showers as it feels like little needles stabbing at my skin, I’m fine with the bath. I hate feeling sun on my skin, so summer isn’t great. Clothes do feel uncomfortable and restrictive unless they’re soft and loose fitting. I also have issues with the noise thing which seem to have got worse as I’ve got older. Can’t stand noisy pubs or restaurants any more.

I have some very niche interests. On the one hand it’s great because I get a lot of fun and happiness from them but on the other hand there’s no one I know that shares them! So no one to talk to about it. And the things others talk about do often bore me.

Life isn’t always easy, but overall I don’t think I’d want to be any different. I know some people see me as a bit odd. But I like me! I can still find childish joy in things which I think a lot of adults lose.

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Wombat64 · 29/07/2021 13:57

@Sofuckingsad

For me, ADHD is like being the only DRUNK person in a room of sober people. Grin

So f'ckin true!

I read the sober comment & immediately thought this. I've never had to drink...
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user1471548941 · 29/07/2021 13:59

I have autism and am almost entirely driven by my own processing needs. When I have sensory issues such as too much air con in the office, I cannot focus on anything else apart from that.

In a social sense, I take things exactly as I see/hear them. “We should do this again sometime” isn’t a polite conversation closer for me, it means I want to organise a repeat of the same occasion, at the same place, preferably on the same day of the week! It’s incredibly frustrating when people don’t see things my way because they are always based on what was actually said rather than body language/tone/implications.

It is also wildly annoying when people read things into my body language/tone etc- I don’t have a clue what they are doing or what I’m supposedly to implying by them so why are you telling me I’m grumpy/cross?! I’m not, I’m just concentrating!

The world is not set up for neurodiverse people and I find this incredibly tiring. I have to be careful in every single thing I say or do or everytime I listen to someone in order to check I’m not missing something and even then I still get it wrong.

My brain just gets “stuck” sometimes with obsessions. This may be something as simple as resolving an issue with a utility company - I cannot rest until it is fixed and become incredibly upset if this is not possible. Or it may be a “larger” special interest, such as photography or music that I could spend HOURS talking about.

I’m CONSTANTLY trying to manage my own behaviour and brain but sometimes it’s like my brain is it’s own entity which decides what it wants and what it does even if I can see that it’s not logical, I don’t get a choice. I am often very tired and cannot speak by the end of the day.

However, there are many positives.

I see things in a way no one else does: I enjoy music, lights, sights in a way that no one else I know does. It gives me a complete unparalleled joy and makes me emotional.

My brain is incredibly efficient and logical. This is incredibly useful at work though I have to work at being polite to people who can’t keep up.

I am loyal and committed and strive towards stable long term relationships in a small circle of people that I trust.

The majority of issues caused by my autism are caused by me trying to fit in to a world that doesn’t really accept how I present as an autistic person. When I spend time with other autistic people I become much less tired, drop my guard and feel like I am “got” or that I get others. I never feel like this at any other time, I am always on the periphery of a social group.

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therocinante · 29/07/2021 14:02

For me (ADHD), apart from the obvious things - sensory issues, etc, which as you can say you can picture relatively easily I think - it's a sense of wrongness a lot of the time.

I very often feel uncomfortable and not right and as though I have to try very, very hard to be 'normal'. Even alone, when I've no need to mask my behaviour, I cannot watch TV without shaking my legs or being distracted or missing half of what's being said because a tiny noise in the next room has hijacked my entire brain power and I am acutely aware that I can't just sit down and watch TV like a non-ND person.

I can't socialise like a neurotypical person because it gets to a point where it feels physically painful, like having raw skin and nerves and everything is rubbing on them.

I can't keep my home tidy, keep things organised, remember anything. It sounds minor, but when you are overwhelmed constantly and you collect parking tickets and late payment fees like Pokemon cards it compounds the guilt of not being like a normal person, and not being able to explain that "just put an alarm on your phone" won't work because I will immediately cancel the alarm because the noise is stressful and then just as immediately forget.

I hate that I can't "just do" things. Executive dysfunction has been the most difficult and defining element of my life and being diagnosed in my twenties set of a slow avalanche of "oh that's why I couldn't do X Y Z" that even now, just hurts to think about. It's why I couldn't "just start" my dissertation (getting me a terrible mark for my rushed-through, 1 week to go, adrenaline driven effort), it's why my front garden is a mess a year after saying I needed to repaint the bench and tidy up, because I can't "just do it". I can be sitting on the sofa wanting to go for a shower before bed and I just... can't. I'm not scared or physically unable or anxious, I just can't get the linking bit between thinking about it and actually doing it. And that is something I struggle with every day - work that needs doing to a timescale, not when I have the random spurts of 'able to go'.

It's a very shame-inducing feeling, and something I have to work hard not to internalise as much as I have.

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drspouse · 29/07/2021 14:05

That's the number one thing I would work on with your son - keep his confidence high and help him devise strategies to manage any recurring issues
Oh dear - currently he refuses to do anything even very slightly challenging (e.g. play a game he hasn't seen before) so he hardly ever gets any sense of achievement, which is really worrying for us.

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LittleMissBoss · 29/07/2021 14:10

autisticmama.com/neurotypicals-do-autistics-cant/

Hope this link works, I did read another article similar but can I heck find it! Its and interesting read.

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SirenSays · 29/07/2021 14:18

For me it's the little things that are so hard. I went on a date recently which meant I was checking the menu beforehand so I knew what I could eat without making a mess or feeling terribly self conscious. Begging my date to please go first as he knew the way and I didn't and I struggle with instructions like "Turn right here"
Then at the end of the date wishing I could turn into dust and disappear while he watches me struggle to get my arms through my jacket or figure out how to put my shoes on the right feet.

Having a meltdown for me is like, try to imagine TV is blaring, the radio is on, your phone is ringing, the dog is barking and there's someone banging on the door. It's a complete overload.

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BlankTimes · 29/07/2021 14:19

I've found Purple Ella can explain her neurodiversity in a way NT's can understand easily.

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CapybaraConnoisseur · 29/07/2021 14:37

made an account just to answer this. I have ASD, and I possibly have ADHD too.

As PP have said, it's like being drunk in a room of sober people. I absolutely hate having to mask in public, i hate being around people that i dont choose to be around. its exhausting, its overwhelming.

I'm constantly upset and overwhelmed though. All the time. I cry over the tiniest little things. DP helps me out loads and is very patient, but my exs have made me feel terrible about how i am especially after i was diagnosed. I was made to feel "more autistic" than i am.

I can't deal with small talk, i feel like it's useless and boring. I will talk for hours and hours about my obsessions but to who? i wont even talk to DP about them because i know it's boring.

I try to keep everything in, but because of past relationships now i am very clingy, very paranoid. But I feel things more intensely than others. I feel other people's emotions and get sad when they dont match my emotions, because I match theirs, but I can't help it. For example, if someone says "Oh my god you'll never guess what!?" I'll be like "ooooo what?" but if i say the same thing, "oooo guess what?!?!" others will be like, "....yeah? what?"

Sometimes i feel like the world isn't built for us. Conversation doesn't want us so we feel we don't want conversation. I feel like others don't get us that much we're just cast out, i dont have many friends and find it hard to keep relationships, because i dont believe i deserve to be treated well, because I feel like I'm a fuck up.

I'm just constantly depressed. If I'm left to my own devices, or it's just me & DP, or me & my friend, i'm happy, though. Out in the big wide world, i just feel so alien, so lonely, so out of touch with the world, but i try not to be, so so so hard.

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PattyPan · 29/07/2021 14:53

I don’t have any diagnoses but suspect dyspraxia. When I found out from MN that other people can judge how much time has passed and have an idea of what time it is I genuinely burst into tears because I don’t have a sense of time at all and I felt like my brain was missing a piece.
I also almost crashed my bike into another cyclist when I pulled out on him, because I am a bad judge of distance as well and that combined with the lack of sense of time means difficulties with speed. He said ‘what are you doing?!’ And I was really apologetic as I couldn’t judge how fast he was travelling so I couldn’t judge what was a safe gap. And people ask me why I don’t drive!

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