The Neurodiversity Thread

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I have a ND daughter. She is very bright and loveable but autistic and absolutely PDA - we've really found the right way to interact with her (low demand, being there when she needs us but leaving her alone when she needs time in her bedroom that is basically a self contained studio apartment the way she's done it out).

It's a weird one - but I kind of have a guilty feeling about how easy it has been to access help - I feel bad that other families, possibly with more extreme issues than ours aren't getting what they deserve. I feel bad - although I know she requires and benefits from the support that she's getting - is it just because me and her dad are middle class and articulate and know how to get it?

It's very unusual. I don't get it. We got her EHCP first time. The county council have agreed to fund a place at a suitable school. No tribunals. No lawyers. I am so grateful but I just don't understand why it's been given so freely to us when I know for a fact there are children unable to access any form of education and I'm feeling some sort of survivors guilt. They all say it's what she needs and what she deserves and I know that's true but what about all the other kids...?
 
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I have a ND daughter. She is very bright and loveable but autistic and absolutely PDA - we've really found the right way to interact with her (low demand, being there when she needs us but leaving her alone when she needs time in her bedroom that is basically a self contained studio apartment the way she's done it out).

It's a weird one - but I kind of have a guilty feeling about how easy it has been to access help - I feel bad that other families, possibly with more extreme issues than ours aren't getting what they deserve. I feel bad - although I know she requires and benefits from the support that she's getting - is it just because me and her dad are middle class and articulate and know how to get it?

It's very unusual. I don't get it. We got her EHCP first time. The county council have agreed to fund a place at a suitable school. No tribunals. No lawyers. I am so grateful but I just don't understand why it's been given so freely to us when I know for a fact there are children unable to access any form of education and I'm feeling some sort of survivors guilt. They all say it's what she needs and what she deserves and I know that's true but what about all the other kids...?
We’ve had exactly the same experience, I prepared myself for a battle and actually the journey has been suspiciously smooth sailing so far! You appear to have a similar mindset to my own, to get on with things at home and find what works for your family, the other ND parents I’ve spoken to or witness online are very different, they await instruction and try to continue a typical family life or worse, use TikTok as their source of information and support. I’ve met a few parents locally who quote social media like it’s the gold standard of research and are then shocked the LA doesn’t take them seriously 🤦🏻‍♀️

My observations so far are that parents who can eloquently demonstrate techniques they’ve deployed at home, and that have made actual real-world adjustments to their child’s needs are the most successful at being heard… That doesn’t equate to buying a bubble tube or a blackout tent because that’s what they do on TikTok (I have a bit of a bugbear about this side of social media, can you tell?) If a child needs them, then by all means, but there’s a lot of expensive kit out there that seems to be the focus rather than looking at personal behaviours or trying to understand their child. That’s not to say that all parents are ignorant, it’s hard to convey in a short message, there’s a chasm of difference between walking into a consulting room upset about meltdowns and talking about sensory toys, and walking into the room with a calm child tip toe walking the perimeter whilst you explain your morning routine.

It could also be a class divide, as horrible as that is to suggest, that the parents who are able to articulate are believed more, or perhaps they observe the parents, and note those who also exhibit signs of ND, which makes it more likely their child is too, or perhaps the parents who are successful on the first try do not seek out social media resources and so it becomes a biased echo chamber? Or perhaps the majority of children seeking care plans are older and masking more effectively?

Apologies for the ramble, I have many thoughts on this area of ND life! It’s hard to voice without risking offence, but you are certainly not alone in having had a relatively easy ride navigating this area, I would recommend distancing yourself from the SEN forums that discuss these difficulties as it will be doing nothing positive for your mental health, you’ll forever be looking over your shoulder for a spectre that isn’t chasing you
 
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We’ve had exactly the same experience, I prepared myself for a battle and actually the journey has been suspiciously smooth sailing so far! You appear to have a similar mindset to my own, to get on with things at home and find what works for your family, the other ND parents I’ve spoken to or witness online are very different, they await instruction and try to continue a typical family life or worse, use TikTok as their source of information and support. I’ve met a few parents locally who quote social media like it’s the gold standard of research and are then shocked the LA doesn’t take them seriously 🤦🏻‍♀️

My observations so far are that parents who can eloquently demonstrate techniques they’ve deployed at home, and that have made actual real-world adjustments to their child’s needs are the most successful at being heard… That doesn’t equate to buying a bubble tube or a blackout tent because that’s what they do on TikTok (I have a bit of a bugbear about this side of social media, can you tell?) If a child needs them, then by all means, but there’s a lot of expensive kit out there that seems to be the focus rather than looking at personal behaviours or trying to understand their child. That’s not to say that all parents are ignorant, it’s hard to convey in a short message, there’s a chasm of difference between walking into a consulting room upset about meltdowns and talking about sensory toys, and walking into the room with a calm child tip toe walking the perimeter whilst you explain your morning routine.

It could also be a class divide, as horrible as that is to suggest, that the parents who are able to articulate are believed more, or perhaps they observe the parents, and note those who also exhibit signs of ND, which makes it more likely their child is too, or perhaps the parents who are successful on the first try do not seek out social media resources and so it becomes a biased echo chamber? Or perhaps the majority of children seeking care plans are older and masking more effectively?

Apologies for the ramble, I have many thoughts on this area of ND life! It’s hard to voice without risking offence, but you are certainly not alone in having had a relatively easy ride navigating this area, I would recommend distancing yourself from the SEN forums that discuss these difficulties as it will be doing nothing positive for your mental health, you’ll forever be looking over your shoulder for a spectre that isn’t chasing you
As a neurodiverse adult I’ve found that some of those SEN forums talk a lot of fearmongering nonsense anyway as of course it’s the neurotypical parents chatting about what they perceive rather than the neurodiverse individual. Not to say there’s not some positive communities! :)
 
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As a neurodiverse adult I’ve found that some of those SEN forums talk a lot of fearmongering nonsense anyway as of course it’s the neurotypical parents chatting about what they perceive rather than the neurodiverse individual. Not to say there’s not some positive communities! :)
Totally agree! I think most neurodiverse parents don’t need to seek out help, they’re raising miniature versions of themselves 😂

FYI the account adhdtwitter on Instagram has some excellent “omg that’s so me” memes 👌🏻
 
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I have a ND daughter. She is very bright and loveable but autistic and absolutely PDA - we've really found the right way to interact with her (low demand, being there when she needs us but leaving her alone when she needs time in her bedroom that is basically a self contained studio apartment the way she's done it out).

It's a weird one - but I kind of have a guilty feeling about how easy it has been to access help - I feel bad that other families, possibly with more extreme issues than ours aren't getting what they deserve. I feel bad - although I know she requires and benefits from the support that she's getting - is it just because me and her dad are middle class and articulate and know how to get it?

It's very unusual. I don't get it. We got her EHCP first time. The county council have agreed to fund a place at a suitable school. No tribunals. No lawyers. I am so grateful but I just don't understand why it's been given so freely to us when I know for a fact there are children unable to access any form of education and I'm feeling some sort of survivors guilt. They all say it's what she needs and what she deserves and I know that's true but what about all the other kids...?
It's just luck, please don't feel guilty.

My experience has been hit and miss. The two EHCP's I've had to apply for were accepted first time but I've heard today my council have refused to fund the school I've chosen for my son so I think that will end up going to tribunal. I've also struggled to find the right help for him and find he's just passed pillar to post. He's currently school refusing and has been for the majority of the last eighteen months. He's not getting an education and I'm teetering on the brink of having to give up work (his dad refuses to help with childcare) so may well lose our house. There's no quick fix and one of his younger siblings (dx last year) is also struggling at school so I see another EHCP application on the horizon.

I hope everything continues to go well for your family. It's reassuring in a way to hear of a more 'successful' situation.
 
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ADHD is far more easy to diagnose, and dare i say it, people with it function normal while people with autism do not.

I am not "neurodivergent" but I have an autistic family member. He's a lovely gentle giant of a man, but he genuinely struggles with routine changes, communication, hes 19 but only just getting to grips with managing money.

In my experience, all of the people I have met who have so-called ADHD are dragged-up brats whose parents were too proud to admit they failed as parents in disciplining them, so rather than dare say no to them they run them off the doctor and find something else to blame for their brattiness. The doctors, all too keen to line their pockets with money, give these brats placebo pills and mum has bragging rights in telling the world "look! I'm a good parent! He's just an ADHD free spirit!"
What an awful judgemental assumption you make. I haveADHD and I was very well disciplined as a child I had quite strict parents and to this day with a good career and a family I struggle in many ways and it is people with these judgemental opinions that feel they can make these statement that make neurodivergence a stigma.
 
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I read this yesterday this doctor speaking does not believe adhd is a diagnosis and instead character trait, how she describes the assessment is not at all similar to my assessment. My assessment was through the nhs many many years ago but it was over a collection of appointments. It is widely suggested that adhd is under diagnosed especially in women as another health professional has detailed in the article
 
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Brewdog have been shamed for having a toxic /sexist work environment. The bloke’s probably announced this to get some of the heat off him. It makes me fume when people use neurodiversity as a shield for their unacceptable behaviour.
 
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As a neurodiverse adult I’ve found that some of those SEN forums talk a lot of fearmongering nonsense anyway as of course it’s the neurotypical parents chatting about what they perceive rather than the neurodiverse individual. Not to say there’s not some positive communities! :)
I've been kicked out of Facebook groups supposedly aimed at both parents and adults with Autism for being an adult and not a parent.
 
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Brewdog have been shamed for having a toxic /sexist work environment. The bloke’s probably announced this to get some of the heat off him. It makes me fume when people use neurodiversity as a shield for their unacceptable behaviour.
Brewdog are notoriously tit in any number of ways, so it's not hugely shocking.
 
Brewdog are notoriously tit in any number of ways, so it's not hugely shocking.
Their issue is they want everyone to be the same type of cultural fit for their ‘lad’ culture which is problematic for all sorts of groups including neurodivergent people 🙄
 
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I have been reading this thread with interest as my cousin is convinced I have ADHD. At first I dismissed it as I thought she was just jumping on the latest “bandwagon” and I didn’t think I fit the profile. However, the more I look into it the more I’m reading things that resonate with me. I feel like I always have too many “tabs open” in my brain but thought this was just part of being an overthinker and a mum. I struggle to focus when there is too much background noise, I often feel overwhelmed and unsure where to start with a task (e.g. even when my kids come in from school I don’t know what to tackle first - the dirty shoes, homework, unpacking the bags etc, and even sorting out my washing stresses me out sometimes), I’m super clumsy and always breaking stuff/ falling over/ bumping into things, my cupboards are absolute chaos no matter how many times I tidy them out and swear I’ll keep them that way, I am totally all or nothing especially with my eating so my weight fluctuates drastically (which I only recently discovered can be a characteristic of ADHD), I’m terrible with money and totally spend impulsively, I talk nineteen to the dozen and I do have some sensory issues. However I don’t think I’m hyperactive. My husband just thinks I’m a bit quirky and highly strung 🤷🏼‍♀️. I just wondered what people’s thoughts were, I wouldn’t be bothered about getting a diagnosis but I would be keen for tips on how to manage it, especially regarding my weight and finances!
 
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I have been reading this thread with interest as my cousin is convinced I have ADHD. At first I dismissed it as I thought she was just jumping on the latest “bandwagon” and I didn’t think I fit the profile. However, the more I look into it the more I’m reading things that resonate with me. I feel like I always have too many “tabs open” in my brain but thought this was just part of being an overthinker and a mum. I struggle to focus when there is too much background noise, I often feel overwhelmed and unsure where to start with a task (e.g. even when my kids come in from school I don’t know what to tackle first - the dirty shoes, homework, unpacking the bags etc, and even sorting out my washing stresses me out sometimes), I’m super clumsy and always breaking stuff/ falling over/ bumping into things, my cupboards are absolute chaos no matter how many times I tidy them out and swear I’ll keep them that way, I am totally all or nothing especially with my eating so my weight fluctuates drastically (which I only recently discovered can be a characteristic of ADHD), I’m terrible with money and totally spend impulsively, I talk nineteen to the dozen and I do have some sensory issues. However I don’t think I’m hyperactive. My husband just thinks I’m a bit quirky and highly strung 🤷🏼‍♀️. I just wondered what people’s thoughts were, I wouldn’t be bothered about getting a diagnosis but I would be keen for tips on how to manage it, especially regarding my weight and finances!
If it helps at all, women tend to show less hyperactivity than males. It tends to be more of the attention deficit side.

I unfortunately don't have much in the way of advice as it really is personal and what works for you.

The things that help me personally:

I hate to sound like an absolute twit but I do find healthy eating and exercise really helps. I really hate to bleeping say it cause it's so bleeping annoying but I personally find that exercising (first thing in the morning for me but any time is good!) helps (HIIT or swimming). It gets my energy out and I find I can focus a lot more and experience less sensory overload. I appreciate that isn't do-able for everyone though although even just a quick stretch, a quick dance around, some star jumps helps.

I use phone reminders constantly. As I type this my phone has just binged to tell me to get the washing in. If a notebook is more suited to you, use that (I do like that too but I have to rememeber to read it which I won't).

I find abandoning all sense of 'should' helps and I just do/buy whatever it is to make my life easier (I call it neurodivergent tax lol). I think it's really easy to get bogged down by what she should be able to do/remember but there's not shame in making life easier. So things like:
  • A slow cooker - absolute life saver
  • Buying pre-cut veg or bulk frozen veg- yes it's more expensive but it makes life easier when I can chuck it in the slow cooker or pan.
  • I have a whiteboard on my fridge to write stuff on like to do lists, what I've run out of, appointment dates
  • I also have a calendar next to it on the fridge (magnet) so that I can see the month ahead, helps to remember important dates and it means I can go 'oh it's mother's day the end of march, let me write on my whiteboard that I need to buy cards'
  • Writing everything down.
  • Reference points for everything so for example, when I go to the supermarket, I try to park in the same area or I'll line my car up to a reference point of the store so that my car is (e.g) aligned with the end of the trolley cover. I sometimes will walk directly in a straight line (within reason obviously) until I hit the reference point. That way when I leave the store I go the end of the trolley cover outside the shop and walk directly straight line back until I find my car. There has been too many occasions of me crying in the car park cause I've lost my car.
  • Post it notes galore - my house looks like stacey solomon's but less instagram worthy lol. I stick them on everything. My meals in the freezer with details and a date. My milk so I know when I opened it (i'm really fussy with use-by dates so I won't guess, I will just throw it out.)
  • The "put away not down"/'everything has a home' motto - If I dump something on the stairs, it will stay there. I also apply that logic to things like hanging my clothes up with the outside out so that when I go to get dressed I can put stuff on straight away.
  • I have timers for things. I literally have a 2 minute tooth brush timer in my bathroom like a child but time is a bizarre concept for me anyway and I like to wander while I brush my teeth so having a timer means I can wander in and out of the bathroom and still brush my teeth for the correct amount of time.
  • Keep everything as visible as possible (clear bins - also helps to keep stuff organised - 'everything has a home')
  • Keep everything in a home that makes sense and is easy to get to. Stuff I use frequently stays in top drawers so they are easy to grab. My everyday clothes are on the right side of the wardrobe organised in outfit order (bottoms and top, bottoms and top) so I can literally just open the wardrobe, grab them and go.
  • I write everything that needs doing around the house down and separated into daily, weekly and monthly - sounds absolutely nuts and it goes back to my point above like I should be able to remember to do my washing/hoover the floor etc but I won't until it gets to chaos and then it feels impossible. So I find that a list means I can do a daily check of 'floor = hoovered and mopped, bag and lunch for tomorrow = packed, dishes = washed and put away, counters = disinfected, breakfast stuff = set up ready to go'. So in your case you could be like 'evening routine goes 1,2,3' with the visual list as an aide-memoire if you will.
  • Spend money on stuff that will help you and make your life easier. If having labels, storage, post it notes whatever will help then do it.
Basically the logic is to abandon all sense of should and do whatever makes you feel better and life easier.

I also think it might be worth seeing what is giving you your dopamine fix too. People with ADHD have naturally lower levels of dopamine so we tend to gravitate to quick fixes like spending, sugar, social media/doom scrolling, fast food, fatty foods, gambling etc.
 
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If it helps at all, women tend to show less hyperactivity than males. It tends to be more of the attention deficit side.

I unfortunately don't have much in the way of advice as it really is personal and what works for you.

The things that help me personally:

I hate to sound like an absolute twit but I do find healthy eating and exercise really helps. I really hate to bleeping say it cause it's so bleeping annoying but I personally find that exercising (first thing in the morning for me but any time is good!) helps (HIIT or swimming). It gets my energy out and I find I can focus a lot more and experience less sensory overload. I appreciate that isn't do-able for everyone though although even just a quick stretch, a quick dance around, some star jumps helps.

I use phone reminders constantly. As I type this my phone has just binged to tell me to get the washing in. If a notebook is more suited to you, use that (I do like that too but I have to rememeber to read it which I won't).

I find abandoning all sense of 'should' helps and I just do/buy whatever it is to make my life easier (I call it neurodivergent tax lol). I think it's really easy to get bogged down by what she should be able to do/remember but there's not shame in making life easier. So things like:
  • A slow cooker - absolute life saver
  • Buying pre-cut veg or bulk frozen veg- yes it's more expensive but it makes life easier when I can chuck it in the slow cooker or pan.
  • I have a whiteboard on my fridge to write stuff on like to do lists, what I've run out of, appointment dates
  • I also have a calendar next to it on the fridge (magnet) so that I can see the month ahead, helps to remember important dates and it means I can go 'oh it's mother's day the end of march, let me write on my whiteboard that I need to buy cards'
  • Writing everything down.
  • Reference points for everything so for example, when I go to the supermarket, I try to park in the same area or I'll line my car up to a reference point of the store so that my car is (e.g) aligned with the end of the trolley cover. I sometimes will walk directly in a straight line (within reason obviously) until I hit the reference point. That way when I leave the store I go the end of the trolley cover outside the shop and walk directly straight line back until I find my car. There has been too many occasions of me crying in the car park cause I've lost my car.
  • Post it notes galore - my house looks like stacey solomon's but less instagram worthy lol. I stick them on everything. My meals in the freezer with details and a date. My milk so I know when I opened it (i'm really fussy with use-by dates so I won't guess, I will just throw it out.)
  • The "put away not down"/'everything has a home' motto - If I dump something on the stairs, it will stay there. I also apply that logic to things like hanging my clothes up with the outside out so that when I go to get dressed I can put stuff on straight away.
  • I have timers for things. I literally have a 2 minute tooth brush timer in my bathroom like a child but time is a bizarre concept for me anyway and I like to wander while I brush my teeth so having a timer means I can wander in and out of the bathroom and still brush my teeth for the correct amount of time.
  • Keep everything as visible as possible (clear bins - also helps to keep stuff organised - 'everything has a home')
  • Keep everything in a home that makes sense and is easy to get to. Stuff I use frequently stays in top drawers so they are easy to grab. My everyday clothes are on the right side of the wardrobe organised in outfit order (bottoms and top, bottoms and top) so I can literally just open the wardrobe, grab them and go.
  • I write everything that needs doing around the house down and separated into daily, weekly and monthly - sounds absolutely nuts and it goes back to my point above like I should be able to remember to do my washing/hoover the floor etc but I won't until it gets to chaos and then it feels impossible. So I find that a list means I can do a daily check of 'floor = hoovered and mopped, bag and lunch for tomorrow = packed, dishes = washed and put away, counters = disinfected, breakfast stuff = set up ready to go'. So in your case you could be like 'evening routine goes 1,2,3' with the visual list as an aide-memoire if you will.
  • Spend money on stuff that will help you and make your life easier. If having labels, storage, post it notes whatever will help then do it.
Basically the logic is to abandon all sense of should and do whatever makes you feel better and life easier.

I also think it might be worth seeing what is giving you your dopamine fix too. People with ADHD have naturally lower levels of dopamine so we tend to gravitate to quick fixes like spending, sugar, social media/doom scrolling, fast food, fatty foods, gambling etc.
That’s so helpful, thank you very much for taking the time to reply.
 
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