Parents of Neurodiv...
 

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[Closed] Parents of Neurodiverse children/friendships/ effect on parents and children...

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We're lucky enough to have two children with ASC and ADHD both boys, aged 12 and 14 at mainstream school highly intelligent, youngest is in top set for everything oldest excels at sports.

Friendships, oldest has a good set of friends and seems popular you wouldn't even know he's on the spectrum conforms to everything at school.

Youngest he's a completely different kettle of fish, started secondary school in sept 2020 and made some friends. fast-forward the last 9 months he's completely ostracized himself at school with not being particularly nice to most of his friends, he cant comprehend what he's doing. I know he feels sad about this yet he wont talk about it or even acknowledge it.
We are constantly trying to make playdates for him which seem to work occasionally, its got to the point now that parents of his so called friends now ignore the messages or come up with completely stupid excuses. he was supposed to be meeting a friend yesterday one a few left, the mum sent a message to my wife with some stupid excuse, my wife replied its fine I know your son dislikes (name removed). the mother never replied!
We now take the rejection personally and have for months its utterly shite, we know he can be hard work but no child should be taking this much rejection, school brush it under the carpet saying its not their issue, we think it is.
He's such a nice boy when he's behaving and great fun to be around - worry about the future for him.

back to the parents id prefer if they were honest not bullshit us, though I can see the difficulty they're in.
I know id never be so rude and would actually try and encourage friendships - they know he has ASC /ADHD.

We do talk to a family therapist regularly

Ranting again !


 
Posted : 31/05/2022 1:21 pm
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back to the parents id prefer if they were honest not bullshit us,

On a vaguely related subject we have some friends whose eldest son is a complete shit.

It's very hard to tell them "look we don't want to see you because I'll probably end up stabbing your son in the eye with a fork". So we just lie.

If their kids are going to be somewhere, we're not. Simple as.

NB He is a complete shit because his father fails to acknowledge his existence until he has managed to get into a life threatening situation which has gone well beyond anything you'd expect. At which point, he might get a glance across the room.


 
Posted : 31/05/2022 2:03 pm
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On a more related note, I have an autistic & ADHD child. She's generally terrible at social things and doesn't have that many friends as a result.

But when you get "stupid excuses" from the parents, try to picture the scene at the other end...

Mum: "Billy's mum has asked if you want to go and play with him."

Child: "No, I don't want to, he's rude and says weird things."

Mum: "Go on, you used to be good friends with him."

Child: "But I really don't want to, please don't make me."

Mum: "Oh alright then, I'll have to make up an excuse."

Yes, sometimes other parents can be a bit weird, but mostly it's nothing personal and you should see the "bullshit" as a white lie.

I hope your kids can continue to be happy in mainstream schooling. Many parents of ASD kids would be envious of that.


 
Posted : 31/05/2022 2:15 pm
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I'm afraid it's not the school or other parents fault or problem. It's hard enough with a 'normal' teenage boy, i think our youngest who's not the most outward going anyway, was severely held back by the pandemic in terms of social development, although it's been a bit like someone flicked a switch recently and his confidence / social skills suddenly came back and he now at least interacts with his peer group. All you can do is be supportive and not make too big a deal of it, certainly not expect others to change their behaviour, most won't and even if they do it won't help them adjust to adult life.


 
Posted : 31/05/2022 2:27 pm
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unfortunately most ND parents on one hand insist that everyone is on the spectrum, whilst simultaneously not understanding exactly what being on the spectrum entails. When faced with it you're left with the response of weird, rude, etc etc.

It would be nice to have people around who do understand, but ultimately, why should they? they're not your friends, your kids just happen to be at the same school and may have hung out a bit, or until your kid has said or done something socially unacceptable, which at high school age can be a pretty fine line. Then they're no longer in the loop and the labeling happens and sticks firm.

you can't control everything, so concentrate on things you can influence to make the living experience as good as it can be for your kids.

in our experience, a supportive school is very important. My daughter (ASD and ADHD) was outcast at high school, got in with the other outcasts, and ultimately was bullied by them. the school were useless, basically said they were just bad kids and that they concentrate on the high achievers to get the most out of schooling, without the disruptions from the bad kids. (she wasn't diagnosed at that time, not that it really should have made a difference!)
so we removed her from school.
about 6 months later she was invited to choose her next school, she chose one with an autistic unit in it, but she wanted to be in mainstream. it worked well, as the staff had some strategies in place already for ASD kids, and a fair bit of experience. it was a leaning curve for us and the school, as they'd not had a ASD pupil in mainstream, but flexible schooling hours, solo break out rooms and essentially no more pressure than absolutely required to do anything but show up.

We did have to be in attendance a lot though. she'd go into meltdown and need picked up and brought back to home, her safe space. This happened frequently at first, but less and less as the years went on.

My wife gave up her job, moved to some part time work, but most weeks she'd be on call, phone in hand, ready to get her when needed. And we had a lot of meetings with the school to explain what was happening and find what best suited her to reduce the stressers.

We went from her first high school experience, in with bullies, up to allsorts and having a suicide pack under her bed, to now, having just finished her degree heading for a good grade, in her own place, and working in a place she loves.


 
Posted : 31/05/2022 2:31 pm
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he was supposed to be meeting a friend yesterday one a few left, the mum sent a message to my wife with some stupid excuse, my wife replied its fine I know your son dislikes (name removed). the mother never replied!

Not helping really.


 
Posted : 31/05/2022 2:50 pm
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It does get better. One of my lad's best mates is Autistic.

It did provide some tricky situations when they were at high school, in that we'd just explain he (the friend) was 'wired' slightly differently and didn't always realise if he'd done something. They still remain good mates, and I would say my son's mate has coped with his autism better as he got older.

I suppose it's finding a good friend/small group. Kids can be right shit's and some parent's can too. My son didn't have many friends as he was bullied, so is good friends with a small group from school.


 
Posted : 31/05/2022 2:57 pm
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I do feel for you. I was the weird one at school with some ( in hindsight) autistic and adhd type behaviors. I did end up with a small group of good friends who were also misfits in the end but it was never easy. sport ( tho i was never really good) was my salvation. Playing team games helped a lot

the only thing I can suggest is looking for a support group for parents who can help you find strategies to help.

It must be intensely frustrating for you


 
Posted : 31/05/2022 2:58 pm
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I know he feels sad about this yet he wont talk about it or even acknowledge it.

Definitely worth exploring this further. Some ND people are absolutely fine with a lack of friends, but are still aware of the societal pressures that you're expected to conform to and get confused as to why so many people feel the need to spend so much time with other people, and that then leads to feelings of anxiety and upset about social things. Allegedly.


 
Posted : 31/05/2022 3:22 pm
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As a parent of an autistic daughter, we find play dates particularly difficult. She can cope amazingly well at their houses as she tries to fit in by masking her true self, however when she gets home she’s exhausted from all the effort it’s taken. Play dates at home though is a problem. She thinks when friends come over they should do what she wants (as it’s her home/play date) as she’s done what they wanted at their houses. This invariably ends badly when one of the kids decides not to join in.

We’ve made a conscious effort to tell the parents of her closest friends and they’ve all been encouraging so far, but occasionally the excuses are obvious which is upsetting, but understandable. It doesn’t faze my daughter, it bothers us more.

To all parents of autistic children, and even those without, the book ‘Can you see me?’ By Libby Scott details her school life/friendships from her point of view. Fascinating, heartbreaking & educational. I think her books have really helped us understand what my daughter needs, both from friendships and parents.


 
Posted : 31/05/2022 4:12 pm
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/watches thread with interest


 
Posted : 31/05/2022 4:26 pm
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It's quite a tough gig as a parent - but then most things are. We're building towards high school at the moment with our youngest who has similar/different challenges and starting to see their friends drop away a bit. Not sure what life is going to look like in a few years time. I've come to the point where I try not to worry too much about how other parents are about him. Invite kids over and if they want to come that's great, getting angry doesn't help me or him if they don't. I'm sure the frustration will build a bit as we go on though.

I hope things feel a bit easier for you at some point soon, enjoy the good moments where you find them.


 
Posted : 31/05/2022 4:26 pm
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Boy2 is autistic and at 19 and about to leave Tech college, is alone when it comes to any sort of friendship group.

During secondary school he was excluded from the local school with an autism unit to the school for the uneducatable. All those kids with deep social and behavioural issues. He went from being barely able to attend to student of the year in his first year at Tech college. It was all about the setting and teachers for him.

I feel for him, he’s so like me in many ways, but as hard as we try we can’t make friends for him, and that is something that has become harder as he gets older.

No real advice, sorry.


 
Posted : 31/05/2022 4:33 pm
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okay, was going to catch up properly tonight but had time to read as the work thing is taking longer than I expected (but in a good way).

Similar thing here, high academic achiever but an almost none existent social circle, zero interest and has a tendency to get really upset if plans are not going as she expected.
14-15 so this is on top of the usual I hate Dad thing they go through which maybe confusing things but I do worry about her.


 
Posted : 31/05/2022 4:39 pm
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he’s completely ostracized himself at school with not being particularly nice to most of his friends,

You can't force people to be his friend. If you had a group of friends at work, and one was "Not particularly nice for 9 months" to you, you would probably ignore them too.

On a more positive note,  does the school have any lunch clubs? Perhaps there is a club that other kids with similar  behavioural traits attend/are attracted to they can attend to make friends?


 
Posted : 31/05/2022 5:22 pm
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I feel for you we have an adult daughter with ASD and ADHD, though she also has a learning disability, communication difficulties and challenging behaviour. From primary school age until now she has very rarely had what you could call proper friends of her own age. There have been many attempts over the years by us, schools and carers to try to encourage friendships with her peers. Sadly due to many factors such as her diagnoses and the level of support she needs it has meant building and maintaining friendships has always been difficult. I understand everyone on the spectrum has different traits but for our daughter interactions with anyone (especially those unfamiliar) does heighten her anxiety, and being brutally honest any interaction usually has to be solely on her terms which often does not make things easy. I wouldn't say she is lacking all empathy but she has so many obstacles in her own head to deal with it makes all social interactions difficult, let alone listening to and taking into consideration another person's feelings, needs, opinions, etc i.e things which are conducive to building a friendship with someone. She has had some very good and rewarding relationships with school staff, carers and family members, but in some ways it is not the same as having true friends around her own age. On a more positive note as she has got older and matured I would say overall social interactions though still difficult have got a little easier for her. I understand our situation is pretty far removed from yours though as our daughter needs constant support from carers (which you could also argue is also a barrier to peer to peer friendships!).

We are also good friends with the parents of a teenage boy who has a ASD diagnosis. Since starting a mainstream secondary school they have had issues concerning friendships and bullying. To put it bluntly their son is bloody hard work a lot of the time. He can be funny, caring and good company on occasions but often his attitude could be viewed as selfish, uncaring and demanding, and he can be pretty obnoxious to his parents, family and peers. He projects a persona at home where he sees the whole world as revolving around him and will tell you he is the best at everything and would never admit he is wrong or he has any problem. This fragile façade often comes crashing down and he has some pretty full on meltdowns. It is a vicious circle because a lot of the deemed anti-social and negative behaviours he displays can be put down to his ASD traits and reactions to the physical and verbal bullying he's receiving from his peers, but one seems to exacerbate the other. His parents to their credit try their best to give him positive experiences outside of school and encourage his interests. It's a very frustrating situation and causes our friends a lot of stress especially when thinking about their son's long term future. They think he would probably benefit from moving to another school which could provide more support, but from our own experience we know that's easier said than done. It's always encouraging to hear that some people have had positive outcomes for their ASD kids.it does seem to be so often a situation where there are not the resources in mainstream schools to give enough support but also there is also the balance where too much intervention with a young 'high functioning' ASD person could negatively impact the opportunities they have interacting with their NT peers.

I think Lovewookie makes some good points, from our own experience it is often hard at times to realise that most people don't care/ understand what you or your son or daughter is going through (why should they) and just letting it go, vs reacting to people with ignorant attitudes!

Like many on here have said when I look back through my own life growing up I would say I have many traits where I can empathise with those diagnosed with ASD. I am a classic introvert who even now at the wrong side of mid forties finds most social situations and interactions scary and exhausting. I was often labelled the weird quiet shy kid growing up and I'm probably now labelled by some as the weird quiet anti-social bloke. I am not good at recognising social cues and am not always good at 'friendly' banter as I take comments too literally, and I don't like being around loud overbearing personalities. Luckily there are many good people in this world that don't prejudge everyone at face value and I have in my own ways had some (but not many) good lasting friendships.


 
Posted : 31/05/2022 6:51 pm
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Father of ASD/ADHD/Anxiety suffering daughter currently sitting her GCSE's. She has no friends, she retreats when left alone into online interactions looks for friendships that generally end terribly due to poor social skills and high expectations. I could shield her from that but think it's better to equip her to navigate it as she will have to encounter it at some point. Secondary school has been pretty miserable but she is moving on to a much smaller, more supportive college that mainly takes kids with SEND or additional needs. We are hoping she might form some friendships here but the flip side of the smaller classes is you have a smaller chance of meeting someone you click with. My daughter has definitely struggled with not feeling normie enough for mainstream but not different enough for some of the groups that we have tried to get her to engage with and this is something we have tried to work through with her.

I find the Op's expectations of the school and other parents a bit much, neither of those parties have any responsibility to provide friendships. Obviously they shouldn't prevent them forming or allow negative interactions to happen but not sure you should expect any more than that.

Does your son have any hobbies or interests you can foster? That's probably the easiest route to forming connection with others


 
Posted : 31/05/2022 7:30 pm
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This is a tough one. One of our good friends kid is very neurodiverse. He seems to be over the worst of a very bad period now and we help out looking after him when his parents need cover for counselling/meetings/work etc. He can be horrible - doors slammed in your face, shouting, screaming, spying etc. I understand it and when he gets through it we can have a reasonable time sometimes. My kids will see him now and again.

When it was really bad my kids wouldn't go anywhere near him to be honest and I would never have forced it. His behaviour really impacted on my two in different ways. Once we found out what he'd been talking about and how he'd been behaving with my youngest we stopped all contact for quite a while. Harsh but protecting my kids is my priority.

When our friends asked for playdates etc. I'd always check with my two and if they weren't' up for it I'd just say no and explain they didn't want to. It must have hurt them but I wouldn't lie.

The family have been very badly let down by the education authority and the health board. Really disgusting to see how they've been failed when they so badly needed help.

Not sure if this helps the OP but thought I'd pop it up.

Hope things work out over time.


 
Posted : 31/05/2022 7:47 pm
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I do wonder who or whom these 'diagnoses' actually benefit. I remember back in the day that so many middle-class kids were diagnosed as 'dyslectic' which many experts now question the existence of.

Medicalising kids like this seems to have come from the US.


 
Posted : 31/05/2022 8:03 pm
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I do wonder who or whom these ‘diagnoses’ actually benefit.

Since my daughters diagnosis we’ve been able to liaise more closely with the school and enrol the help of a educational needs specialist. She also has a weekly visit from a lovely family first rep, who helps her greatly on a one to one basis.
She now has a quiet place where she can go to with no questions asked. The school now understand why she can’t make it on time every day, and that she can’t cope with the daily change that schools so often require. It’s not that she won’t make it to school on time every day, it’s that she can’t. And that’s the difference most NT people (especially in school) fail to understand.
But the diagnosis is for her. For her to do how she pleases. For ages I’ve been trying to get her to do a presentation at school to show her class how her autism affects her, but she chooses not to. At 10 she’s working out ways of managing in a NT world. She’s utterly incredible.


 
Posted : 31/05/2022 8:43 pm
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@paino but what kids wouldn't benefit from all those special provisions?


 
Posted : 31/05/2022 8:46 pm
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@i_scoff_cake My kids wouldn’t benefit from those provisions because they don’t need them.


 
Posted : 31/05/2022 9:03 pm
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98-E93050-C512-44-AF-B7-A1-5-ADEB1-CEBAE4


 
Posted : 31/05/2022 9:14 pm
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More as a sub-text, these ‘ND’ kids are being taught that all their problems are the fault of society being structured in a so-called neurotypical way. Who does that help? The social model of disability breeds resentment and helplessness.

You're being quite offensive mate. Are you OK?


 
Posted : 31/05/2022 9:16 pm
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these ‘ND’ kids are being taught that all their problems are the fault of society being structured in a so-called neurotypical way.

I'm not really sure that's true. As someone relatively early on in this journey, having tools and language to help my daughter recognize her own behavior and feelings has been very useful.

I've not really come across any resources painting the picture your suggest.


 
Posted : 31/05/2022 9:19 pm
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@i_scoff_cakes. I totally disagree. My wife is badly dyslexic. When she was finally diagnosed just before secondary school she got the help she needed and began to perform to her capabilities. More importantly she regained confidence and self esteem.

My two kids don’t need the assistance she got because they’re not dyslexic.

My mothers got terminal cancer and benefiting from treatment. I wouldn’t benefit from that treatment as I don’t need it.

Simple?


 
Posted : 31/05/2022 9:22 pm
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I scoff cake

I came to realise my oddness / autistic traits in my 50s. I am fairly sure that if I were at school now I would have some diagnoses attached to me. In hindsight at school there were things I badly struggled with and a diagnosis might have helped me and others understand why I did stuggle with writing ad spelling despite being academically successful.

A diagnosis or better understanding might also have helped me avoid some stuff in my career that caused me a lot of distress

It can be a double edge sword in that it can be used a an excuse for poor behaviour and diagnosis does seem to go in trends but for those who are autistic a diagnosis can be a very helpful thing.

I don't have a formal diagnosis now. I decide that it was not worth pursuing at my age

Oh - and dyslexia is real


 
Posted : 31/05/2022 9:47 pm
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these ‘ND’ kids are being taught that all their problems are the fault of society being structured in a so-called neurotypical way.

Thats offensive nonsense. do you actually have any experience or knowledge in the area?

It’s like the special education provision for dyslexics kids, all kids could benefit from them.

Coloured printing, special glasses? None of the measures are any use to non dyslexics. the stuff my badly dyslexic colleague used made my eyes hurt but worked for her


 
Posted : 31/05/2022 9:48 pm
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You’re being quite offensive mate. Are you OK?

No he's being "typical"


 
Posted : 31/05/2022 9:53 pm
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typical tory?


 
Posted : 31/05/2022 9:54 pm
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continuing from what I said above. (and mistakenly put ND instead of NT)

if my daughter hadn't had the support from school, at best she wouldn't have been in school, at worst she wouldn't have made it to 15.
for us, getting the support mechanisms in place did two things. it helped us manage our time better and eased the pressure knowing that the school would be looking out for her specifically. It also gave us a bit more confidence challenging those around us who were insistent that 'she's OK when she's with us' or that 'teenagers all go through that'.

Some still thought that we were demanding parents who were putting it all on and that by allowing her to be who she is and not reprimanding her more for bad behaviour, we were raising a monster.

I guess that's one aspect of being a parent of someone with ASD. you lose 'friends' quickly. or you at least realise who is more open and non judgemental. it's a bit like being on facebook and being horrified that your mates voted leave/remain (depending on your choice..)

can be quite isolating.

My wife and I had to put everyone we knew at arms length, with some being OK, but very few actually getting what was going on. We had very little family/friends support throughout and have had to put people in boxes to separate the feelings left from them not helping, yet still being OK to talk to them socially, as we still need some social interactions.

The question of whether ASD type allowances could benefit all teenagers. I've no doubt some could, but as others have said, it's about needs. Many teenagers cope OK without any sort of intervention. those who have ASD often require additional services to function on a level.

I have no doubt that, if ASD was widely identified when I was at school I'd have benefited massively from it. It's only when I was in my 40's that I realised that I have ASD.


 
Posted : 01/06/2022 10:17 am
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Some brilliant posts on here. Don't have time to do a full answer but with several varying degrees of ND in our family unit (dose of ADHD in OH, eldest, ASD for me), I agree with heaps on here, the support you can get is literally life changing for the kids who get it. And sometimes it doesn't need to be *much* support - just a few helpful wheelchair ramps. Our eldest is about there and local school has been brilliant, a couple of hours a week with their SEN specialist for a couple of months really helped his relationship with his teacher of two years back - sometimes the help is more about educating the other adults involved (it was for us) than it is giving the ND kids any particular help.

Other parents, family, friends, not all of them will get it, not all will help, some will openly disbelief or criticise and some will just freeze them out / find excuses to exclude them (thanks, local activity group that shall not be named, I'm looking at you). C'est la vie. We deal with as best we can.

Without support things can be terrible. I recently spoke to a workmate who has two ASD daughters, one of whom was getting shut in a room by her school as they couldn't deal with her. Forcing her to "fit in" just resulted in endless meltdowns which meant her literally being locked in a room. No wheelchair ramps there. They've finally got her out of that school into a different one that deals with needs properly. Getting playdates and friends organised is now something they can actually look at doing. Life changing.

So personally I'm really really happy that ND is now on the radar for society and particularly in schools where awareness can make a world of difference. I got by, my wife got by, but both of us could have understood our situation and dealt with early life a whole lot better with just a small amount of support.


 
Posted : 01/06/2022 10:54 am
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@i_scoff_cakes

these ‘ND’ kids are being taught that all their problems are the fault of society being structured in a so-called neurotypical way.

May I ask are you getting that from? I’ve worked for the largest portion of my career at a school specialising in/catering for the needs of ND students (principally ASD/EBD/PMLD), working and studying alongside behavioural specialists, psychologists, CTs, parents, the LEA, various advocacy groups and organisations and what you describe has not been my experience. Not at all.

Would you consider sharing your experience/s of what you describe, rather than just throwing that stuff out there?


 
Posted : 01/06/2022 12:28 pm
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these ‘ND’ kids are being taught that all their problems are the fault of society being structured in a so-called neurotypical way.

This is poorly worded at best.
these ND kids are being told that all their problems are the result of society being structured in a 'neurotypical' way.

then comes the 'wired differently' conversations, 'you can't help being ND as much as they can't help being NT' and general removal of blame and guided acceptance of how it is.

I'm going to generalise here, but most of the 'everyones being diagnosed with something or other these days' devaluation statements tend to come from the older generation. and the idea that parents are teaching kids to behave certain ways is often a way for them to justify their thinking.


 
Posted : 01/06/2022 1:00 pm
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most of the ‘everyones being diagnosed with something or other these days’ devaluation statements tend to come from the older generation.

Agreed. See also "mental health? just pull your socks up".

Thankfully, attitudes are changing as time passes.


 
Posted : 01/06/2022 1:40 pm
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I have a grandson who has been diagnosed with ADHT. And also something else I don't quite remember but basically is, if someone tells/asks him to do something he will do the opposite. He can be really really loving on one hand and totally destructive on the other. Often trying to hurt you and actually watching you closely to see the reaction.

I need some help/instruction with dealing with him as I simply don't have the tools. i am old fashioned and really thought he was just a naughty boy. Not a bad boy. I have come to realise that he needs help and so do I to help him.

I often think we forget about the other people who come into contact with kids like this who have no experience and often no idea on how to help. I nearly always go away from interactions with him thinking I could have done that better.

Not sure I have explained it very well though


 
Posted : 01/06/2022 2:08 pm
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I don’t quite remember but basically is, if someone tells/asks him to do something he will do the opposite

Pathological demand avoidance? I am all-too-familiar with it unfortunately.

I nearly always go away from interactions with him thinking I could have done that better.

Not sure I have explained it very well though

You're doing great, don't worry mate. Several of my family (and me) have been on the same journey.

🙂


 
Posted : 01/06/2022 2:18 pm
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I do wonder whether there is more of the underlying problem around these days. I mean - it seems so? Have I just blanked out all the kids having meltdowns in my own classes? We're talking 40-50 years ago.
Has there been something going on that triggers problems in kids, or, were there the same number and if so what happened to the kids with those issues in the 70s, 80s, 90s?
ETA genuinely asking for other oldies' thoughts - it's a bit harder to tell as not coping with school AT ALL means more likely to lose touch with people - by contrast, although being gay was not encouraged in the 70s, enough of my classmates from middle school are gay NOW that it does indeed seem that it was always about how well you bearded up.


 
Posted : 01/06/2022 3:06 pm
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I do wonder whether there is more of the underlying problem around these days. I mean – it seems so?

What is ‘the underlying problem’, and please cite studies.


 
Posted : 01/06/2022 4:29 pm
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IME kids in the 70's and 80's were either labelled as special needs and removed, naughty kids, and removed, or bullied into a state where they shut down in school and had meltdowns when at home. then labelled uncontrollable by parents and family. This could often lead to kids leaving home as soon as they could to get away from it all, basically searching for a more compassionate environment.

Society in the 70's and early 80's was not geared up to deal with this. If you think about the common derogatory tags that were about then, it was a rough time to not conform.

I can think of a handfull of classmates who, looking back now, were ND. The kid in the lower sets which used his fists first, but now successfully runs his own business. The kid who got himself into mischief, often deviance, but can strip and rebuild pretty much anything with a motor easily. The kid who everyone ridiculed as they were a bit odd, moved awkwardly, yet aced latin and russian languages.

Yes the above on it's own doesn't necessarily make someone ND, but it's really difficult to pin down exactly what their particular traits were, without writing and essay on each. so i'm just trying to illustrate difficulties masking capabilities.


 
Posted : 01/06/2022 4:55 pm
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I wish I had some magical advice, but unfortunately I don't.  My son has been diagnosed as autistic, several years late and we battled for this.  We've been through the mill with it and are currently fighting over an appalling EHCP that seems to have been dashed out after two years of sitting on their hands...

Anyway, the pandemic and his low attendance at school has seen him ostracised from his old social groups. He still has a couple of friends but he is lonely.

I don't blame other parents or the school, it's just very hard for him to maintain friendships.

Hopefully in September we'll have him in a more suitable school and I hope his confidence comes back.

He's back to riding BMX, and I can see glimmers of my old son in their. He's been away for two years and last night cleared a massive double. He had been worried he'd been left behind on the bike, but I think he'll be back at the pointy end of racing at the end of the season.  I'm hoping his old friendships with this circle of mates will be rekindled.  Farmer John's in the morning so he can show me up on the mountain bike 😀.

On a personal note, I've pretty much retreated socially with my son. Folks that I thought would check in with us, haven't.  His mental health issues over the last couple of years have been ignored by professionals and friends. It's been very difficult to watch happen. My marriage has broken down and I don't want to see mates as I'm broken up about my son, I think people expect me to down about my marriage, and that's not my main concern at all.

Just look after him, tell him you love him, it might not illicit the reaction you want but hopefully he'll feel it.  My son very much needs reassuring at the moment.

Right, on a positive note, I have bike kit to pull together, I'm going to see if he'll tow me over the canyon drop.  Suspect I'll get told no way as he won't want me to crash!

If this was a rambling mess I apologise.

Steve


 
Posted : 01/06/2022 7:53 pm
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If this was a rambling mess I apologise.

Nope, that “rambling mess” came across as a clear acknowledgment of where you and your son are, with a glimmer of hope for a way forward. Well done.


 
Posted : 01/06/2022 8:18 pm
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It is an interesting question, is society just better at recognising Neurodiversity or has the incidence increased over the last 50 or so years. Obvs we are better at identifying it, but I would guess that the incidence rate is probably also increasing. Not that I guess we'll ever have a definite answer.

If this was a rambling mess I apologise.

Nope, came across as straight from the heart.


 
Posted : 02/06/2022 10:39 am
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Obvs we are better at identifying it, but I would guess that the incidence rate is probably also increasing

It’s a curious thing to separate diagnosis and incidence.

-Diagnostic criteria has widened
-Diagnostic services have improved/increased
-Social media has increased awareness (and has broken down barriers to diagnosis)

‘Incidence rate’ is a tricky one. What does it actually mean when referring to ND? An ‘incidence rate’? Per capita diagnosed or per capita undiagnosed? There is no ‘baseline’?

Accuracy of incidence data (for example in epidemiology) depends on the accuracy of diagnosis and the reporting of the disease.

When it comes to therapy areas that aren’t as well understood or easily diagnosed, many cases have gone/go undiagnosed.


 
Posted : 02/06/2022 12:25 pm
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My guess is its both - better at identifying and higher incidence - and again only my guess but I believe environmental pollutants contribute to the higher incidence. We now know leaded petrol caused developmental changes in children. What do we not yet know?


 
Posted : 02/06/2022 12:27 pm
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I think as parents of autistic kids we are sometimes guilty of seeing autism from only the positions of own personal situations

Also what I think makes the minefield of trying to understand and give advice about autism etc so difficult is there is no easily definable traits that apply to everyone on the spectrum. The spectrum is wide and the severity and how traits manifest is varied. How an individuals life is impacted (or enriched) by their autism is unique to them (though you could argue there is some commonalities up and down the spectrum). I remember watching a program where someone said when you've met one person with autism you have met one person with autism.

My own personal experience relates to the more servere end and I can often spot traits such as rocking, hand flapping, vocalisations and other stimming behaviours, but sometimes it is hard for me to spot any indicators with those on the higher functioning end of the spectrum. In some ways I think daily life is harder for those on the higher end as they are more self aware and expected to fit in with society, whereas someone like my daughter is more easily identified as having an impairment.

I have some sympathy for anyone who comes into close contact with ND individuals wth no prior experience, and fully understand it is easy for someone to make assumptions about their behaviour. It is hard for everyone to sometimes differentiate between what is deemed inappropriate or 'Bad' behaviour that is due to ASD, ADHD etc and what is due to possible bad parenting, learnt behaviour, hormones, peer pressure, etc

but ultimately is what really matters that we try to ensure all kids get the best possible tools to deal with life? It works when parents, teaching staff and social services (if appropriate) are all on board with the intention of giving each individual child the support that child needs (which is going to be unique for each of them). Oh for a perfect world!

Apologies for my long posts on this subject it's been a big part of my life for the last twenty years and I don't talk much about it outside of our family. I could easily write a book about the trials, tribulations and triumphs we have all been though!


 
Posted : 02/06/2022 3:45 pm
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My youngest - Thud - has ADHD/ autism.
Excluded from primary school - where they shoved him in the library every day. No wheel chair ramps there, just benign bullying leading to a suicide attempt.
Swapped primary schools, got prescribed meds, and he thrived - but then covid hit.
Secondary school has been a challenge - home-learning didn't happen because it was dull, but at the age of 11 he was happily working his way across Scotland's skateparks armed with Google Maps and a Revolut card (these are brilliant for subtly tracking your kids !)
Going into third year of secondary school Thud appears to have a couple of friends but he doesn't do much with them. Deal on a weekend is he leaves the house mid-afternoon to play football at the astro. He arranges this, else he has to come biking with me.
We've never had challenges we are facing now. Children have been ordered to stay home for two years to stay safe - a hug could kill Grandma - and then they are suddenly told to mingle in a big hall with hundreds of other kids. No wonder that anxiety is through the roof.

Anyway - Thud asked me to buy a book on evolution in the future, which I bought, and so am going to go and chat to him about it. Fascinating kid....


 
Posted : 02/06/2022 5:59 pm
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PSA ‘Love On The Spectrum’ and ‘Love On The Spectrum US’ are both streaming on UK Netflix.

Well worth tuning in for all, IMO.


 
Posted : 02/06/2022 6:19 pm

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