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!

therocinante - you explained that perfectly. I have ADD, and I feel like a child compared to neuro typical adults. Get advised “write it on a calendar “ I’ve lost count of the number of Calendars I’ve had stuck on January/February all year, and have stopped buying diaries. For me, I just can’t string a thought together from one hour to the next. Routines are impossible. I have three children and when they all talk at once I have to literally close my eyes and point at one and the others have learnt to stop and wait.

Settling down to “relax” in the evening is exhausting 😂.....constantly getting up ....light the candle, sit down, get a drink, sit down, phone run out...charge it, sit down, need a wee, sit down, bit chilly, get a throw, sit down, thirsty again, make a drink, sit down, this top is making me claustrophobic, I’ll just get changed, sit down......and on it goes .....fuck alone knows what’s happening in the TV plot now 🙄

I have three children and when they all talk at once I have to literally close my eyes and point at one and the others have learnt to stop and wait.
Maybe this is why I sympathise with DS sensory difficulties, when my two and DH talk I have to put my hands over my ears! DD told DH he should get me ear defenders for Christmas.

It’s Hell.

I’ve just come back from the city centre, shopping centre, with my 3DC. Shops blasting out different music, the noise of people, the amount of people, the noise of various stands in the middle, I had to take a Diazepam to get through it.

Had no choice but to go as they need new shoes/trainers and have awkward sized feet, so ordering online and sending back a very costly thing that I can’t afford.

Also needed some other bits that I can’t get elsewhere.

Too many loud, conflicting noises.

The worst shop was Boots (skincare for DD1), the best was John Lewis (various chargers needed for Apple devices) as they don’t have loud music blasting out.

To add - I have ADHD/ASD, DD2 has the same. She had her noise blocking headphones on so was mostly okay, but not an option for me with 5YO in tow.

Everyone has sensory needs, you might find it helpful to explore yours. Sitting in those needs and gaining awareness might be helpful to further understanding your son's.

I have a lot of sensory difficulties. My husband has less for example but has priopreception needs and feels more comfortable sitting awkwardly - his body responds to that feedback and helps him concentrate. Everyone is built different so embracing your own might help.

The website Chewigem has a sensory questionnaire although you need to give your email for the results. It might help.

I am neurodiverse as well, I didnt find out till my daughter was diagnosed with autism. At times, it feels like being a frog in a world of rabbits. You feel weird and sticky and wonder how everyone gets around so easy. Women typically internalise these difficulties so you think there's something wrong with you. Some boys externalise these feelings of discomfort into aggression.

My daughter told me it feels like people want to control her differences, rather than learn about them and accommodate for them. I spend less time nowadays wondering why I'm a frog and more time just feeding my needs, building a home
and a routine that works for us. I worry less about how we're perceived and more time being "abled" to do all the things we want to do rather than being disabled by society.

Good thread.

Really interesting replies.

It is an awful lot like being the only sober person in a room of drunks but also the only sane person in a room of madmen. This is the case in groups when they are doing something that doesn't make sense - like eating at a tourist trap or not booking a taxi home because not being safe after a night out is fun?

Also you are doing normal things for you but meaner NT types laugh at you and you have NO IDEA what is funny because no-one explains it - i wonder if people laugh because someone does and they don't want to miss out.

For me it is like there are a lot of NT people who have got 'it', who know 'it' but the 'it' is so important that no-one tells you.

Oh and assuming things all the time without any reason to. Like 'anyone can ride a bike' 'anyone can see that's funny', 'anyone can use a skipping rope'. I'm 42 and haven't met this anyone person. Or indeed got the 'it'.

If you've met one neurodiverse person... you've met one.

Everyone's different innit. Although I did hear a cute description once.. 'you're a Mac in a world of PCs'.

It will now take me at least til the morning to recover from 4 hours of that shite. I’m exhausted, as is DD2.

But we had a good time, they got new nail varnish, I got some new make up, we frittered some left over Christmas money in Tiger

I much prefer the city centre on a Monday morning at 9am (my only day off work/Uni) as it is like a zombie apocalypse has occurred

Parks and the cinema are my preferred methods of entertaining my DC.

I've both asd and adhd and it's like I'm playing a game where I don't know the rules but everyone else does.

Have you heard of Luke Jackson's Freaks, Geeks and Asperger Syndrome?
www.amazon.co.uk/dp/B00D5YACQU/?tag=mumsnetforu03-21

An easy, funny, insightful read.

You get extra difficulty points if female since as an adult woman aspie I don't exist to most of the population. Neurodiversity still has a very male bias.

The thing is, everyone who's neurodiverse has no experience of been nurotypical, it's our normal so hard to explain what's different without that point of reference. Pre-diagnosis I didn't think "why do I do/think ..." it was more "why are these people staring at my face?, why is she telling me this irrelevant thing? How is that person able to brake the rules/ why do they think I can?"

I have ADHD.

The biggest issue with ADHD for me is basically being overwhelmed. I can get overwhelmed by demands, overwhelmed by executive dysfunction, overwhelmed by my emotions, overwhelmed by things I have to remember, overwhelmed by decisions, overwhelmed by sensory input.

In terms of the sensory issues, I don't seem to have the ability to filter out thoughts or sounds or things that are going on from the thing I need to focus on. Say I'm in the lounge with my 2 children and they are each watching something on their tablet. My husband is in the kitchen listening to the radio. The TV has been left on. There are workmen in next door's garden. My husband is slurping his tea. I cannot filter out any of that, nothing blends, everything jars and it all feels like an assault.

If there are background noises and someone is trying to talk to me, I can't focus on what the person is saying. I get intensely irritated. I feel exhausted. So exhausted I feel like I could just lay down and go into a deep sleep. My brain wants to shut down.

I have RSD, which is common in many people with ADHD. Rejection sensitive dysphoria. Nobody like criticism or rejection, but to me it feels like a physical assault. I will feel it like a punch in the gut and it will totally overtake and overwhelm me. I will lash out verbally with and intense and powerful need to be understood and heard, and be accused of overreacting. I have very little control. Sometimes I will internalise it and feel deep shame.

I notice everything. The slightest change in tone, someone changing the conversation, a sideways glance. Things people probably have no idea of. I will presume people are laughing at me and have intrusive thoughts about what someone is thinking about me. If I find out people are talking about me behind my back it is like my worst fears realised. I presume people don't like me, won't want to see me. If someone doesn't come back to me I will feel I've upset them, feel ashamed and like I've done something, feel the impulse to apologise for it. Often I do and people are like "I was busy you weirdo you're fine". But I tend to blame myself rather than other people, I don't think badly of people generally, but do believe people think badly of me.

Erm... not sure what else you want to know so if you have any questions fire away.

Oh, although I struggle with getting my brain to focus on the right things, I am capable of very intense focus and of being incredibly productive. I am amazing in an emergency. Adrenaline gives me the most insane clarity of thought, it switches on my brain and I notice everything, process everything so quickly and efficiently and just know exactly what to do. I should probably be in the emergency services or something - but then if I've hit a wall and my brain doesn't have anything left I'm absolutely useless so maybe not.

I never ever get bored - there's too much to think about. Unfortunately a lot of it needs thinking about at 4 in the morning.

I am lucky in that I am completely invisible, entirely unseen by human eyes. I have absolutely no self awareness and no idea of what I am physically doing at any time when out and about. This is great until someone says "I saw you in the supermarket the other day! I tried to get your attention but you were in your own little world". Then my blood turns cold while I try and picture all the ridiculous expressions I could have been pulling, and hope I wasn't singing or something. Side note, to those people: my "own little world" isn't little, it's fucking massive.

I get exhausted after a trip round IKEA. I can fall asleep instantly after it. So many combinations of things. Just nuts.

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

Also excellent in emergencies as I quickly know exactly the 'right' thing to do. Really shit after emergencies are sorted out though, as I have a meltdown thinking of everything that could have gone wrong.

I replay conversations I had weeks / months / years ago and think about all the ways I messed up. I have replayed job interviews that happened decades previously. I do this often, most nights really.

If I am meeting someone somewhere new, I 'drive' there on google maps first. I like to give the impression of being spontaneous but I am so not. If one of my friends suggests a new place to eat, I will google it to death. I eat anything, but I want to check that there is food my kids / friends will eat. I google most things. And people.

I like to know where people are from, it is my thing. Like I like to know the origin of things and I like different accents. But then I read this thing about how it's racist to ask people of colour where they're from, so I don't do it anymore. To anyone. It's hard though because I have it in the back of my head until it's answered. Like I can't really move on.

I don't particularly want to be NT. I like hanging out with NTs though. They're fine, in small doses.

@LizzieLookAtTheFlowers snap with the 'being good in emergencies' thing :)

@Sofuckingsad

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

best description ever. If i have more than one coffee, i will be out of control! I am pretty sure I have ADHD, and that my brother and father also had it. I always knew they were 'different'. My son has it...so hard to keep still, even while i type this i can feel my calf muscles flexing and relaxing - i am not consciously doing this. It has been noted when engrossed in reading and totally relaxed, all 4 of us have our big toes going back on forth - cannot still our bodies completely. I cannot focus if there is a crooked picture. its like we all we have to unload the info in our heads and cannot stop the stream of info sometimes. I also find people very confusing sometimes. Everyone seems so slow. its like my brains on fire sometimes. I use exercise to slow the thoughts in my head...On paper we should all be able to easily do phd/post graduate stuff but its v hard to stick with stuff.- my dad didn't finish high school (probably an iq of 150s) my brother barely finised high school(also v v bright) I quit uni but returned when older, my son with a diagnsis struggled to get A levels but talked his way into a great uni and is scrapping his way through last year physics... So its great to have it recognised as that really helps. things are better for this gen. life is harder but also great! Watch for secondary school as the level of organisation is hard for them - he will need a lot of support. my son was under great pressure to do v v well by his school and was a 'disappointment' to them. It was terrible. Its not just being hyper btw - do not respond well to authority. irrational grudges if slighted. The main thing is your son's diagnosis is part of him and he will have to learn to make his way in the world with all his unique characteristics. The most important thing is not to leave school with top grades but a feeling of being loved and supported.

@LizzieLookAtTheFlowers

I have ADHD.

The biggest issue with ADHD for me is basically being overwhelmed. I can get overwhelmed by demands, overwhelmed by executive dysfunction, overwhelmed by my emotions, overwhelmed by things I have to remember, overwhelmed by decisions, overwhelmed by sensory input.

In terms of the sensory issues, I don't seem to have the ability to filter out thoughts or sounds or things that are going on from the thing I need to focus on. Say I'm in the lounge with my 2 children and they are each watching something on their tablet. My husband is in the kitchen listening to the radio. The TV has been left on. There are workmen in next door's garden. My husband is slurping his tea. I cannot filter out any of that, nothing blends, everything jars and it all feels like an assault.

If there are background noises and someone is trying to talk to me, I can't focus on what the person is saying. I get intensely irritated. I feel exhausted. So exhausted I feel like I could just lay down and go into a deep sleep. My brain wants to shut down.

I have RSD, which is common in many people with ADHD. Rejection sensitive dysphoria. Nobody like criticism or rejection, but to me it feels like a physical assault. I will feel it like a punch in the gut and it will totally overtake and overwhelm me. I will lash out verbally with and intense and powerful need to be understood and heard, and be accused of overreacting. I have very little control. Sometimes I will internalise it and feel deep shame.

I notice everything. The slightest change in tone, someone changing the conversation, a sideways glance. Things people probably have no idea of. I will presume people are laughing at me and have intrusive thoughts about what someone is thinking about me. If I find out people are talking about me behind my back it is like my worst fears realised. I presume people don't like me, won't want to see me. If someone doesn't come back to me I will feel I've upset them, feel ashamed and like I've done something, feel the impulse to apologise for it. Often I do and people are like "I was busy you weirdo you're fine". But I tend to blame myself rather than other people, I don't think badly of people generally, but do believe people think badly of me.

Erm... not sure what else you want to know so if you have any questions fire away.

Oh, although I struggle with getting my brain to focus on the right things, I am capable of very intense focus and of being incredibly productive. I am amazing in an emergency. Adrenaline gives me the most insane clarity of thought, it switches on my brain and I notice everything, process everything so quickly and efficiently and just know exactly what to do. I should probably be in the emergency services or something - but then if I've hit a wall and my brain doesn't have anything left I'm absolutely useless so maybe not.

Lizzie, I am trying not to cry. Never could I have described myself so accurately and eloquently. If so, I would have written your post to describe myself, word for word. Uncanny and thank you xx

I have high function autism and my main issue is I tend to focus on one thing at a time. So focusing on my finals, I didn't notice my boyfriend of the time feeling neglected and wandering off. The relationship was ok the last time I checked so I thought it would be fine. If I concentrate on work, relationships suffer. If I'm decorating, I forget to cook. I doubt I will ever have a long term partner.
I'm in my 50s now and much better at picking up signals but as a child and in my 20s I used to say exactly What I was thinking and then not understand why I upset people.
And I have no interest in the emotions of people I don't know. Love Island is mind bogglingy dull and pointless.

My ex boss, an American, said I was aloof, when I just wasn't interested in him because he was 5,000 miles away. Thankfully he put it down to me being a chilly Brit.
The good bits are when I focus, I don't get distracted & can really motor through a task. I'm resilient. I don't get swayed by the latest trend, am logical and spend money wisely as a result. I can spot bad value a mile off.
So not all bad.

@LizzieLookAtTheFlowers same as PP, You have described me too

@Cuddlyrottweiler

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.

Well not really as it implies that the neurodiverse person is 'better' or experiences life in a more functioning state - alcohol damages function. Difference does not equal superiority, however tempting the feeling.

On paper we should all be able to easily do phd/post graduate stuff but its v hard to stick with stuff.- my dad didn't finish high school (probably an iq of 150s) my brother barely finised high school(also v v bright) I quit uni but returned when older, my son with a diagnsis struggled to get A levels but talked his way into a great uni and is scrapping his way through last year physics...

Absolutely this. No blowing trumpet, am very bright, high IQ, full of promise... hormones hit at puberty and couldn't stick at anything. Dropped out of school. Managed to get 5 GCSEs. Dropped out of A-Levels at college. Blagged entry onto journalism course, did first year, missed half of it but blagged a distinction then never went back for second year. Cannot stick things out. Never reached potential. Feel like life has been a total waste.

For me it means any non structured interaction is very hard and tiring. I know (have learned) what happens at the hair dressers or doctor though it still takes.energy. However chatting with friends or dealing with new people socially or unstructured meetings is difficult or impossible at times.

I am sensitive to noise which others see as intolerant but it is genuinely deafening sometimes. I only realised recently that what I perceive as an argument may be a discussion because the voices sound so loud to me.

I was adult diagnosed so got no help at all. I personally would love not to have it, and regard it as a disability as it affects dealing with my physical issues. (This can be a touchy subject).

There's a lot of intelligent writing on this thread, so although there are certainly diverse complications and struggles with daily life, when writing it comes across so fluidly and so well described

That indeed is a rare skill

I wish more regular MNetters checked out these threads and know that ND MNetters exist. It might make for less strange, divisive comments in future - certainly MN is a microcosm of real life and in some ways a faster, more in-depth one.