To ask what it's like to be neurodiverse?

[drspouse]

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!

Well, I'm going to go against the grain and say I like it! But I have my life totally set up around it so I can cope. I'm a specialist teacher for autistic children and I need to be in the specialist setting just as much as them . I have a quiet home (DH identifies as autistic too) and one rather introverted child. We have a lot of routine at home.

I feel like I think much more clearly and logically than some NT people seem to. I'm very good at piecing together a lot of complex information and using it for planning and problem solving. However, I do only really bother to do this for things I am interested in and have been guilty of letting life-admin go because it's not interesting.

I don't like to socialise with people I don't know and if I have to then I have to rest for a long time afterwards. I do like other people, but only really one at a time. I mainly like to get my sense of connectedness from work type relationships where there is a point and function to the interaction. However, I am extremely good at understanding other people because really that is just solving a very complex problem. I'm very aware that I don't 'read' other people using the warm fuzzy 'feels' NT people use!

I only like to wear certain types of clothing so I have a 'work uniform' and a 'home uniform' and just swap between the two.

I think the main reason that I can say I like it is that I'm confident enough in myself and proud enough of my strengths to be able to not care about the things I have to do that are different/ quirky. I don't mask- people can take me as I am.

Love Island is mind bogglingy dull and pointless.
I think anyone who doesn't think thIs is failing to function as an adult, to be fair.

@Cheeeesecake

I am excellent at problem solving but some of you apparently don't want that 😐

That made me laugh, I can absolutely relate to that (and a lot of what you say)!

Had I been diagnosed before I was 34, I would have made very different choices in lifeZ

Thanks for this thread. My son is autistic. I think perhaps I am. Reading this thread really makes me think this. Right now the fan oven is on, my son is watching TV and and I'm struggling to concentrate on writing because the noise of those two things is scraping at my brain. I pretty much always feel like the sober person in a room full of drunks. It's such an apt description.

Hi. I’m mid 30’s and I was diagnosed with adhd last year. I also think I could have autism but professionals aren’t interested in assessing me as they think I function ok and said another diagnosis wouldn’t make a difference to my life.

Anyway, I’m married and have 2 dc who are 12 and 9. My youngest has autism and also adhd the same as me. Raising my eldest child was relatively easy but my youngest is a different kettle of fish. I didn’t realise I could have adhd until after ds was diagnosed but I knew I had “issues” and felt different like I didn’t fit in. Basically I masked all my life without even realising and I suppose that’s what got me through. But when life became extremely stressful a few years ago when my ds was exhibiting extreme behaviour it didn’t cope very well. I found it harder to internalise things but thankfully I have an amazing dh who really helped me. Life still isn’t easy but it’s better than what it was.

As for the struggles I have it’s varies really. I’m extremely sensory so hate bright lights, so much so if the sun comes through my blinds to bright I have to keep them closed. Loud noises can trigger me which isn’t easy when my ds is having huge meltdowns and screaming directly at me. I have social anxiety and although I can social quite well in certain circumstances with family and other people I know, when it comes to big upcoming events like weddings and parties i stress about going for weeks sometimes months beforehand and usually drink more than I should, not drunk, but more than I’d normally do, just to get me through it. I’m very switched on when it comes to my dc abs so the lions share of childcare and stuff at home but I’m a sahm and my dh works long hours so I just have to get on with it. I always make sure that my dc have everything they need but I often leave things until the last minute or if I have to many tasks to do i can do it but end up very overwhelmed and then afterwards I have like brain fog and end up feeling exhausted.

I often miss important parts of a conversation and have to ask for people to repeat themselves which sometimes makes me feel stupid or embarrassed. To many people talking at once or talking to loudly can often get to me. I like routine but at the same time I procrastinate and put off doing things that require a lot of concentration and mental effort but then I get frustrated within myself for then having to rush in order to get things done. I easily get bored so need a lot to do but then sometimes it takes me ages to start doing what ever it is I need to do.

As a person I’m very empathetic, I feel things deeply which isn’t necessarily a bad thing, but then sometimes I feel to much and end upset. I have a degree of rejection sensitivity which stems from my childhood and often need reassurance. When it comes to being impulsive I’m not so much like that these days. I was as a child but now it’s more in my head as in i overthink things and can’t switch off. I’m very cautious with what I say, what I do, how I manage things but I’ve learnt to do that growing up into an adult which I think was so that I’d fit in and could be to do with my anxiety eg not wanting to upset people.

My dh is the only person I’ve told about my diagnoses and to be honest to look at me and speak to me you wouldn’t suspect I had adhd. When my mask is up I can be the most confident happy person but behind closed doors sometimes it’s very different. I work so hard not to project my problems on to my dc and although my youngest has the same condition it’s hereditary so there wasn’t much I could do about that. My eldest though is the most happy confident young lady you’d ever meet. She’s the complete opposite to me and I’m so glad she doesn’t face the same difficulties that me and her brother do. So yeah it’s not easy but on the whole I’m happy. I have a lot of shit to deal with internally that most people don’t but I get on with it every day and do my best.

I recently realised I have ADHD and some other neurodiversities and it's been a light bulb moment.

I've been stuck in a viscious circle most of my life. I always wanted to be accepted at school, always wanted to be popular and fit in like the other girls - but I never could and they'd criticise me for being childish, I was always saying the wrong thing and my sense of humour wasn't shared. It left me with terribly low self esteem and social anxiety. I'm a terrible friend because I can't imagine others really care about me - in my head friends tolerate me and I can't believe I could be important to them. This then means that I do things that I don't think will bother them - perhaps not wanting to be in contact ("they'll probably be relieved not to have to speak to me") but which actually hurts them. This makes me feel terrible and lowers my self esteem even more. I now just avoid friendships altogether, it's better for everyone.

I find social chit chat excruciating. In a group setting I prefer to talk to men if possible, the conversation is normally about something 'real', whereas women talk about other people, common friends, kids etc - and I just can't do it, i never know what to say and my face gives away that I really don't care about what people I've never met are getting up to.

I'm intelligent and have been successful at work by unwittingly finding the right niche. However I'm certain colleagues think I'm a bit stuck up and superior whereas I'm just hopeless as a social being - I'm not declining an invite to the work night out because I don't like my colleagues, it's because the thought makes me horribly anxious because I'll not know what to say, and the noise from the music and bar will make it hard for me to concentrate in what they're saying, and it'll just make me feel even more like a failure.

Urgh that sounds really negative and there's lots of things I value in neuro diversity, I don't think I'd change how I am, I just wished I'd understood earlier in life, ive been really hard on myself my whole life and I only now realise it wasn't my fault/failure.

I'm dyspraxic and find gross motor co-ordination difficult so I'm far more likely to drop or trip over something. It used to drive my mother up the wall that she didn't have a graceful elegant daughter.

I can miss the obvious and not understand how something should be done if there is a logical sequence. When I worked I often relied on being able to look at a precedent or create a pro-forma. That had the benefit that once I'd done something once I could knock off something similar pretty quickly. I was very lucky to work closely with someone who was my diametric opposite and very structured which meant that there were quite a lot of precedents to crib off.... and carefully notes from briefings with him could easily be worked up into what he was looking for.

However, the main upside to my dyspraxic brain is that I tend to look all around a problem/situation rather than taking the straight line obvious route - this meant that I had unusual insights as an undergrad which got me into Oxford and then a first. It also meant that I was a very trust and estate planner as I could link lots of things together to come up with suitable structures.

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.

This is interesting. Do you think that as a child, you would have been happier at a school for people diagnosed with autism, or at an integrated school with a roll comprising mostly of NT children?

I have ASD.
I find e.g. the school run chatting really difficult. It's like all the mums have been given some code book that allows them to chat effortlessly- I cannot copy it. I dont know what to talk about, or why, or for how long. I feel despair, like I'm an alien and I want to go and bury myself somewhere quiet.

I have what i now recognise as occasional meltdowns where everything has built up and is just too much, and i need to run away. If i can't I feel like a cornered animal lashing out.

Sometimes I don't understand the unspoken meaning behind words. Like my partner said 'put the kettle on'... so i did. Didnt realise he meant to make him a coffee!
That said, I have a great sense of humour and completely get sarcasm.

It's hard, honestly. I imagine my regular background level of anxiety would be very uncomfortable to a NT person.

@Guineapigbridge

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.

This is interesting. Do you think that as a child, you would have been happier at a school for people diagnosed with autism, or at an integrated school with a roll comprising mostly of NT children?

Not the poster youre quoting, but I did normal school and then a very small school for those on the spectrum and other sen as a child. I personally much preferred the second school for sen, my grades went up massively, had friends, much better environment for me.

@Aisforharlot

I have ASD. I find e.g. the school run chatting really difficult. It's like all the mums have been given some code book that allows them to chat effortlessly- I cannot copy it. I dont know what to talk about, or why, or for how long. I feel despair, like I'm an alien and I want to go and bury myself somewhere quiet.

I have what i now recognise as occasional meltdowns where everything has built up and is just too much, and i need to run away. If i can't I feel like a cornered animal lashing out.

Sometimes I don't understand the unspoken meaning behind words. Like my partner said 'put the kettle on'... so i did. Didnt realise he meant to make him a coffee!
That said, I have a great sense of humour and completely get sarcasm.

It's hard, honestly. I imagine my regular background level of anxiety would be very uncomfortable to a NT person.

Goodness I feel this way- like what did I miss about the art of conversation

I’ll do silly things like repeat something or say the wrong thing . Eg if they know it’s my birthday and they say ‘happy birthday!’ I’ll go ‘oh yes and you!’ Then think ‘no no wtf are you doing’ a bit like when I end a call with ‘love you’ to the drs or something forgetting it’s not a dh phone call but because I’m stressed using the phone I mess up 🤦‍♀️

I feel like there’s a brain-mouth connection that breaks down when I’m trying to socialise and I just can’t get words or answers in at the right time or the right place it’s like when you drop a pen between someone’s thinks and finger and they have to catch it to see how quick their reactions are - i never manage it

Honestly sometimes I go home and laugh a lot of times I go home and cry at what an awkward person I am

Thanks so much for everyone who has commented about the way they perceive the world, it helps me (NT) enormously to try and understand even more what life's like for my now adult DD who has ASD and a host of co-morbids.

For anyone struggling with the accumulation of different noises as described, like in a shopping centre or lots of people talking at you at once, google Flare Calmer. They weren't specifically designed for neurodiverse people, but there's a lot of positive feedback from the neurodiverse community.

I also have a running commentary whilst trying to socialise that goes along the lines of ….

‘Right pinkmug. Make sure you say hello to everyone. Don’t blush just don’t. Suck the redness back down they’ll think you’re weird.

Nod, nod and smile. Look interested that’s what’s people do. Have eye contact

Don’t start blabbering on about yourself. Ask them questions about what they are taking about, look at them remember eye contact! Not too much you have flickering eyes now it’s weird, calm down .

Keep looking interested , think of something to say back.

Don’t look at your phone. It’s rude. I know you feel overwhelmed but it’ll just look rude. Remember eye contact. Stop thinking about that thing you’re obsessed with , you armed listening properly’

Etc etc 🤦‍♀️

pinkmugoftea

Haha this me. Someone says something entirely normal and either I respond with the wrong thing, or I freeze trying to work out what I ought to say, and then spend the next hour feeling embarassed.

It's a million times worse if someone compliments me, I have no idea what to say then. I also panic if there's something more complex - if someone says their mother is terminally ill I panic because I don't know what to say, and I'm terrified I make it awkward for them.

I've felt broken my entire life, always inadequate, always unwanted, always letting everyone down. When I was diagnosed with ASD it was a huge relief. At least I wasn't a proto-serial killer.

Life is like being blindfolded in a room of sharp edged metal cubes, all of differing sizes and at random heights and positions. You're expected to move through it faster and faster, bouncing and slamming from corner to cube to wall, stubbing your toes and banging your head. Everyone else has the blindfolds off, and all the time they're shouting conflicting advice at the top of their lungs.

This is just normal life. It's normal things, like people trying to start up a conversation, or walking into the office in the morning. Ordinary things that normal people just do. But it's mental bruises, emotional cuts, a cacophony that wants to spill out of your mouth into a scream.

I really get angry about people who say it's not a disability, or that somehow we're a special or different breed. That's a kindly intended, utterly stupid delusion. ASD is suffering.

I feel like I'm from my own culture.

If you've ever gone to another culture or country, where you can understand the language but the injokes don't make sense, people seem to click together but you don't quite fit, where you can mostly understand people but the tone isn't right, where there's different rules of politeness. I used to live in a different country where certain rules eg. How you cross legs, how you address others, whats rude etc was different. My peers really struggled with the rule changes but for me it always feels like I'm not fluent and reading out of a guide book. I feel like I think something then have to remember if that fits my context, rather than just knowing the rules

A lot of my thinking is quite manual. When i speak to other people I have to check myself. Ironically I'm in a job where its a high empathy and high communication job but when I start seeing a client I will run through: is my face right? Am I sitting in the right direction? Are my hands in the right place? Feet pointed to the person etc. I sort of have a pose

Add wise my brain struggles to identify what I should be listening to stimulus wise. Other peoples brains learn to block out unimportant noise, eg don't notice clocks until its quiet, can't hear pipes etc. Its what people complain of when they get hearing aids that amplify everything

If I'm talking to someone, my brain pays equal attention to the clock ticking clock, how the noise next door, their foot tapping as it does to what they are saying.

I struggle with textures. Sometimes I spend the whole day feeling every bit of texture eg feeling of a top on my skin, the seam of my jeans on my leg, my sock on my ankle etc and can't concentrate

Other times I lack awareness and my feet might be bleeding etc from bad shoes and I haven't notice or clothes have left bruises

One day I wore some shoes that didn't fit (and weren't mine!) And that dug massively In. My other half asked how I didn't notice but I can feel all shoes on my feet so was just like ah yeah thats shoes for you

Mine comes across in a range of ways. As a child i was diagnosed with dyspraxia and likely add. As an adult I'm told by others I might fit into some of the autism boxs.

I now have good coping strategies and often feel like I dont meet the criteria any more. But when I speak to NT people it can really highlight the differences.

Often things make sense to me. I spend my whole life doing things like chopping awkwardly but as long as it happens I don't care. It makes sense to me and its only when other people try to say "do it the easy way" that i realise certain things don't make sense to others

I've never been diagnosed but I'm sure I have something in the ADD range. I was shy as a child and had to be dragged screaming to classmates parties or if it was other kids I was comfortable with I would be the other extreme. I remember getting grabbed by the upper arm very tightly by a friends mum at his sisters birthday party (it was the 80s) and hissed at through clenched teeth that if I didn't calm down NOW I would be taken home. I was being what I thought was ok. I was terrible at any sports, awful coordination and bullied for it. I withdrew as I got older. Never learnt the intricate social skills that other kids learn. Missed out on school discos and the like as I became depressed at about 14. Messed up my education as I couldn't wait to leave school as it made me suicidal in the end. I loved the learning but the social interaction side terrified me daily.
Fast forward to now and I don't drink anymore as I used that as a crutch to cope to get me out to pubs and clubs. I hate small talk but can talk for work things for hours as I've learnt a script in my head. I hate bedtime as sleep is hard for me to achieve. My brain just won't shut up, not about important things that would be helpful but absolute rubbish such as an episode of eastenders from the 80s. My concentration with new subjects is odd. I can be full on with the learning then with no warning just switch off and be in panic mode as my brain seems to have decided it doesn't care about whatever subject anymore.

When I was young my mum decided to cut out all E numbers in an attempt to help. That didn't help at all. I was t allowed sweets or fizzy drinks and any friends I did have had to tell their mums I wasn't allowed the same.

As far as how it feels, it's very isolating I feel like I'm in a greenhouse and I can see and hear people outside and can talk to them but there is still an invisible barrier that they can't see but I know it's there.

My whole early years involved a lot of crying and feeling depressed. I don't remember a happy childhood like most people do.

I'm 45 now so don't know if a diagnosis would solve anything, sometimes I think I'd like to know once and for all. But also feel that I have to play the cards I've been dealt so have to just get on with it and learn strategies to help me. It does make me feel bitter quite often. Just for one day I would give anything to feel like other people feel.

Have a look for More Than One Neurotype on FB. She has neurodiverse kids and although only got her own diagnoses of Autism and ADHD a year ago, knew she was neurodiverse herself for a long time before that.

She’s an advocate and talks a lot about what it’s like for her, and talks positively about neurodiversity, encouraging NT people to be more aware and accepting.

I’m NT myself, but I find her posts informative.

ADHD here - I feel like I'm moving and thinking at twice, three times the speed as everyone else in the room. Not in an arrogant way, just literal speed.
Imagine speaking with someone, getting instructions, or hearing a story - when they are speaking at half speed or less. Imagine how fidgety, and impatient and rude it'd make you feel.
It's really horrible, as it makes me feel like a right cow most of the time.

@chocolateorangeinhaler

I've never been diagnosed but I'm sure I have something in the ADD range. I was shy as a child and had to be dragged screaming to classmates parties or if it was other kids I was comfortable with I would be the other extreme. I remember getting grabbed by the upper arm very tightly by a friends mum at his sisters birthday party (it was the 80s) and hissed at through clenched teeth that if I didn't calm down NOW I would be taken home. I was being what I thought was ok. I was terrible at any sports, awful coordination and bullied for it. I withdrew as I got older. Never learnt the intricate social skills that other kids learn. Missed out on school discos and the like as I became depressed at about 14. Messed up my education as I couldn't wait to leave school as it made me suicidal in the end. I loved the learning but the social interaction side terrified me daily. Fast forward to now and I don't drink anymore as I used that as a crutch to cope to get me out to pubs and clubs. I hate small talk but can talk for work things for hours as I've learnt a script in my head. I hate bedtime as sleep is hard for me to achieve. My brain just won't shut up, not about important things that would be helpful but absolute rubbish such as an episode of eastenders from the 80s. My concentration with new subjects is odd. I can be full on with the learning then with no warning just switch off and be in panic mode as my brain seems to have decided it doesn't care about whatever subject anymore.

When I was young my mum decided to cut out all E numbers in an attempt to help. That didn't help at all. I was t allowed sweets or fizzy drinks and any friends I did have had to tell their mums I wasn't allowed the same.

As far as how it feels, it's very isolating I feel like I'm in a greenhouse and I can see and hear people outside and can talk to them but there is still an invisible barrier that they can't see but I know it's there.

My whole early years involved a lot of crying and feeling depressed. I don't remember a happy childhood like most people do.

I'm 45 now so don't know if a diagnosis would solve anything, sometimes I think I'd like to know once and for all. But also feel that I have to play the cards I've been dealt so have to just get on with it and learn strategies to help me. It does make me feel bitter quite often. Just for one day I would give anything to feel like other people feel.

Sounds very, very much like ADHD. There are 3 types - inattentive, hyperactive & impulsive and combined. Combined sounds like the winner for you.

I'm in a group on FB for women with ADHD. It presents very differently fro women with a lot more emotional dysregulation. And what happens for girls with ADHD around 14 is hormones - estrogen to be specific - and that causes this hitting a brick wall in your life issue. Same happened to me. I was diagnosed with CFS after glandular fever but it was the same age, and it was ADHD depression for sure.

I know women who are being diagnosed in their 70s and finding it so liberating. To know that you aren't just substandard and rubbish compared to society's expectations of you and there's been a hidden adversary there the whole time making life tougher for you than a lot of other people... that's a big weight that can be lifted. Understanding yourself, having insight into why you do what do you makes you so much more forgiving of yourself.

There's also help! Masking and coping is possible but it's exhausting and just as puberty is a massive crash-point for girls with ADHD so is menopause so getting help now would really make a big difference to you.

There are medication options, and there are therapy options. You can get referred to a fully online assessment and diagnosis service that will then get you started in treatment.

Honestly. I don't know anyone whose regretted pursuing their diagnosis in adulthood even if they haven't opted for stimulant medication.

Good luck. I really recommend making a GP appointment. They will get you to fill out a form to check for signs and symptoms. Ask for a referral to Psychiatry UK under the Right to Choose scheme.

I'm on the waiting list for an ASD assessment, and DD2 is in the middle of the process. Also have dyslexia and dyspraxia.

Honestly - it just feels like being me. I've never known what it's NOT like to be inside my head to know anything different really.

I did spend my childhood and teenage years regularly getting beaten up for being "dead odd" or "looking at someone funny" - I remember one time when I would have been in year 7 or 8, being dragged into a classroom by some of the year 10s who were telling their mates that "you've got to see this girl - she's really weird". Would get the shit kicked out of me if I walked to the local shop, got followed home by a gang of kids who stood outside the house for hours one day... never did figure out what I had done "wrong"

Mum was always (she still does) telling me off for being too emotional or too sensitive or saying inappropriate things. Same in school - I remember a week of detentions for saying something "rude" and I did not have a fucking clue what the hell I'd said or done to incur the punishment (so that one really worked as a learning experience).

Semi found my tribe at university... found my tribe more as a gamer when I got older - but the one time I've actually felt I fitted in, was doing a course placement recently at a school with a lot of autistic kids - the stuff that bothered them, the need to fiddle, the understanding of when they were feeling anxious ... I felt like I belonged as well as the kids!

The sensory stuff is worse for me more than ever - I struggle with eye contact - am I doing too little, am I looking away and looking shifty, am I doing the strange stare-y thing. I tend to cope by looking at people's noses and mouths - it's enough in the direction of eyes that it passes... but face masks have freaked me the fuck out and buggered that one up - I go to the supermarket and I just see a sea of eyes that I can't read or understand and it sets me off. Likewise the signage - when everything is blaring yellow and black with commands and warnings - that is like being stood in a room with an army of wasps with megaphones screaming at me. And the noise - my family know that the first thing I will do when I enter the lounge is to turn the TV volume down - and over 10 I'll moan about, and over 15 is YOU WILL NOT PASS territory... it physically swamps me and feels like it's going to suffocate me.

It's only since having DD2 that the pieces all fell into place for me and I began to understand it's who I am - rather than just that I deserved another kicking for being odd.

I feel like I think much more clearly and logically than some NT people seem to. I'm very good at piecing together a lot of complex information and using it for planning and problem solving. However, I do only really bother to do this for things I am interested in and have been guilty of letting life-admin go because it's not interesting.

I don't like to socialise with people I don't know and if I have to then I have to rest for a long time afterwards. I do like other people, but only really one at a time. I mainly like to get my sense of connectedness from work type relationships where there is a point and function to the interaction. However, I am extremely good at understanding other people because really that is just solving a very complex problem. I'm very aware that I don't 'read' other people using the warm fuzzy 'feels' NT people use!

I only like to wear certain types of clothing so I have a 'work uniform' and a 'home uniform' and just swap between the two

Never, ever, ever have I felt so completely understood. Thank you @2reefsin30knots. You described me to a tee.

My only problem now is that I came on this thread as a NT trying to understand others POV.

I’ve just posted on site stuff to ask for a board specifically for this… Please go hassle @MNHQ with me

Yes, I get quite angry when I think of how different I would be if I’d been Dx a lot earlier in life and how it has caused a series of unfortunate events.