The Neurodiversity Thread

[Bagelwheat]

Thank you to those who have responded. Certainly some bits to take away and discuss with her this week and hopefully we can start the year off better and turn things around!

 

[shadowcat5]

Does anyone know of any good books about ASD, specifically in females who are diagnosed late?
I need something that is easy to read and no academic/medical language.

I want to help some family understand why some things are difficult for me. I will read it first and highlight any points that are relevant to me.

Does that even sound like a good idea?

Are youtube videos an option? There is a woman on YT called Olivia Hops who was diagnosed at 25 and she does marvellous videos

 

[soph30]

It’s great but why is there such a focus on ADHD these days never thought i’d see a #neurodiverse hashtag that wasn’t just focused on kids though so defs progress!

 

[conrea37]

Bit of a weird one and very minor really but anyone else find they are useless when using a knife and fork? I realised just now that I prefer to eat with a spoon cause it requires less coordination

Yep! I usually use a spork

 

[shadowcat5]

Does anyone else struggle with morality?

Weird one I know but sometimes I feel like I care so much about it. I'll give you an example. I really wanted subway but it snowed really heavily here so the roads aren't safe. Subway is open and deliveroo are open for delivery so I ordered food but now I feel guilty cause I won't leave the house due to unsafe conditions but I'm paying for someone else to drive around.

 

[TwooTwooTwitTwitTwoo]

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.

 

[Kim Mild]

When it says on forms and things ' do you need any adjustments? ' I think I'm at the stage where I do need to say , yes I do need adjustments. Can I just say that? And then explain it what way adjustments would help. I don't have a diagnosis yet , I've not sought one.

 

[soph30]

Brewdog are notoriously shit 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

 

[no-no]

I’ve been reading through this thread and I recognise myself in a lot of what’s been said. Especially the bits about watching the same comfort TV shows to save feeling anxious about the ending. Also dealing with workplace, and social situations.
But does anyone have a partner who they think may be autistic/neurodivergent?
So sorry if I don’t use the right terminology; I don’t have a great understanding of the subject.
I’ve realised after a very long time together though, that what I’ve always seen as emotional detachment and failure to read moods or understand what I’m saying may be due to autism, or something similar.
I always say he’s pedantic in that if I’m telling him about something, he’ll completely miss the point of the story and pick up on the fact that I’ve maybe said left instead of right, or up instead of down.
If we’re arguing, he’ll often say something like he didn’t mean to do it wrong, as though he’s working from some kind of textbook. And he rarely shows any real emotion.
It’s difficult to explain, but there’s a lot of things that make me feel sad or frustrated, that I’m now convinced he can’t help, because it’s the way he’s wired.
I love him, and he’s a good person, but life with him can feel a bit lonely sometimes and I wondered if anyone else is in this situation and how you learn to accept it, and stop picking your partner up on things that can’t be changed.
Sorry for the long post, and if it’s too much “me,me,me”.

Sounds like a lot of men to be honest. Have you had any other relationships to compare to? ASD or not (I wouldn’t say what you’ve mentioned would point to that) you don't have to learn to accept upsetting behaviour. He might not be able/willing to change things but you have to prioritise yourself.

 

[Fifah1907]

Another vote for watching the same comfort shows on a loop


Maybe we could all share our favourites here as suggestions for the others?

Great idea!

Gilmore Girls will always be up there as my favourite
Greg’s Anatomy
Brooklyn 99
Death in Paradise
Superstore

There are probably others but that’s all I can think of right now. Bet you when you guys say things it’ll remind me

 

[Eeyore147]

Hello Autism and ADHD here, raised by parents with autism and EUPD, trying to raise a child with autism/PDA and ADHD, and pretty much no idea what I’m doing

Hi Sounds similar! ASD and EUPD here and query ADHD trying to raise a son with ASD, PDA and ADHD - it’s hard work!

 

[conrea37]

Thank you. Would you mind talking to me about it?
What happens once you are diagnosed? Is it reported to the GP etc?

Yes they informed them immediately, then we did titration before requesting shared care. Some GPs are more willing than others to accept.

 

[yogiessexdubs]

How did your diagnosis come about ? In my childhood, I was just thought to not be trying hard enough.
I've suspected I may be autistic for years , and I'm wondering about adhd now. I've started struggling in the last few, which could coincide with perimenopause. I believe dyspraxia can occur along side another neurodivergence .

I was fortunate enough to have it done through work/private medical. It didn't even register to me to go through the process if I’m honest, it was only because my colleague was going through the process & he said ‘you’re the same’ .
I’m autistic, ADHD & dyspraxia. I’ve always told people ‘Reading numbers is like reading Japanese to me’. At primary school they made us sit on the mat & answer sums before we could leave for the day, I was always the last one left.
I have peace of mind since diagnosis but it hasn’t changed my world - diagnoses is hard to achieve via the NHS so don’t be disheartened, you know yourself at your core.

 

[shadowcat5]

thank you, i really appreciate everything you’ve said 🥹

so yes the school has senco and the head of it was in the meeting today and i’ve spoke with them on the phone before too, they do remove him from class into a “reflection room” and he does reflection sheets sometimes too, his class has around 30 children.

He’s never really been interested in playing with other kids, he will play with them don’t get me wrong and he loves to make friends but he likes to play what he is interested in and only that, if that makes sense? he likes pe and sometimes phonics but there isn’t much else he is interested in, he just wants to draw electrical things all the time.

i have tried reward charts and like positive stuff like if you do x y z you can have my phone for 10 mins and so on but it doesn’t seem to work very well, it helps a bit so i do continue it but doesn’t seem to have much of an impact.

he has had a few watches but he either looses them or breaks them as he is really destructive as well.

the mouth thing no i haven’t got him a necklace but i literally saw them earlier and thought they’d be great for him so i am definitely going to order some!

his room is nice, i recently decorated and he has a “big boy” single bed and nice bedding and teddies etc, he has a fish tank with 2 pet fish in and then a few toy boxes but everything is tidied away in the boxes and then he has a tv at the end of the bed. I have tried a weighted blanket before but i’m thinking of giving it another go and maybe getting some sensory type lighting? he will draw if i don’t make sure i’ve taken all the pens and sometimes he will just run around or run up and down the hall. We can literally spend 12 hours out the house on a child friendly day out and he would still be climbing the walls at night x

God love you cause it sounds like you’ve really tired everything

It’s good they’re aware of it at least and are removing him.

I was the same with friends. I hated having friends over cause my toys needed to be played with my way. As long as he’s happy.

My only other suggestion with sleeping is that he struggles to transition. I say this cause I have the same problem. I will be sat in front of the tv downstairs, eyes closing with exhausting but the act of moving from 1 activity to another is really difficult. I think it’s an anxiety thing but really don’t know.

It’s hard cause we’re not in his head. I really hope he gets the help he needs bless him

 

[snottymole]

I read something that older parents are more likely to have nd children and that was given as a reason for the rise in nd cases . My parents were older when they had me.

I also read some articles/scholarly journals that implied it is more the age of the father (sperm quality) than the mother and that an age gap between the parents (with the father being the older one) of about ten years can be a factor sometimes. Everyone in my family who is ND (quite a few including me lol so I believe being ND is generally way more likely in my family regardless of parental age) has parents where at least one parent (usually the father) was over 40 (usually the mother is younger by a decade) when the ND child was born. I think it's interesting.

 

[no-no]

This is going to sounds strange but I’m wondering if anyone else has this (very first world and pathetic) issue.

I really find it hard to find things to watch. I feel like there is almost too much option between TV with hundreds of channels, all the streaming services, on demand and YouTube. I spend most of the day just flicking between all of them. Now I’m pissed off because it is
4pm and I’ve wasted yet another “chill in front of the tv” day doing nothing.

I’ve just restarted You for the fourth time and thought of this comment. I watched OFAH religiously for over a year, then This Country. Even though I’ve had them on loads of times I still see new stuff in them, it’s not in a “aren’t they creative geniuses” kind of way, more like I miss a lot of info whilst “watching”. I’ve got several new shows to watch but will have to push myself to put them on because it requires so much more processing.

 

[AT_16]

I wish I could be more help tbh! Do you think he might settle a bit when he’s older or even through the coming months? Back to school is a huge adjustment anyway for kids his age, plus with his differences on top of that

i don’t really know, he seems to be getting worse the older he gets which is quite worrying in terms of when he bites, kicks, scratches etc.

i’m hoping maybe in another 2 or 3 weeks he will calm a bit after the adjustment of going back to school but the way he is acting i’m also afraid he doesn’t have 2 or 3 weeks left at the school because they are talking of exclusion

 

[shadowcat5]

Has anyone here paid for a private test? Is it worth it? I feel like I'm drowning

 

[Kim Mild]

Can anyone relate to this?
Sometimes I speak around people and there is no reaction from them at all , no acknowledgement that I've spoken. I've been trying to come up with explanations
- There's some unspoken rule that we are not talking at this time. Like talking time is over and I haven't got the memo.
- I didn't actually say it out load / at the correct volume and they haven't heard.
- They have deliberately ignored me.

It happened with my child's teacher, and I feel like it's odd , as parents often need a quick word.

 

[Jas28]

Can anyone relate to this?
Sometimes I speak around people and there is no reaction from them at all , no acknowledgement that I've spoken. I've been trying to come up with explanations
- There's some unspoken rule that we are not talking at this time. Like talking time is over and I haven't got the memo.
- I didn't actually say it out load / at the correct volume and they haven't heard.
- They have deliberately ignored me.

It happened with my child's teacher, and I feel like it's odd , as parents often need a quick word.

I used to have this happen to me before. I don’t know about you but I had to learn to have a stronger voice as I was soft spoken so essentially assert myself, look in there eyes eye contact and make sure it’s a question and also use their name, it took practice. Also worked on my body language so I can appear more confident, it’s sad but people ignore when someone doesn’t appear confident in themselves so not looking down, head held high up. If someone pretends they or didn’t hear you the first time I would repeat but if they ignore again then that is rude and other people will notice that. Did the teacher see you? I would arrange to meet her book an appointment so it’s definite, and you won’t be ignored then