Parents of ND children - AIBU to find this annoying? Borderline offensive?

I think it’s really important to realise that support isn’t a prize for diagnosis or effort on the part of the parent. Each family needs to balance the pros and cons of their choices and this young man is not your son and may do better or worse in the end but that’s not your call. You should also be aware you are not privy to all the facts, while you might feel you are. So you’re working with poor data, a different set of challenges AND the emotional fall out from your own situation and journey.
It’s really sad that you feel such enmity for SIL’s families way of raising their child.. Obviously you can’t help that, but it must make it harder for both of you. How do you think you are going to lay this to rest?

Is it because you placed a lot of importance on official diagnosis, which took a lot of work to get, and you’re annoyed that others could get support without having the same slog?

Are you a non-confrontational, by-the-book sort of person? Maybe that drove you to take the hard road and seek an official diagnosis, whereas she is arguing that her son’s needs should be met regardless of diagnosis? She’s not wrong, it’s just that her way requires her to advocate a lot more and be a lot more vocal.

ETA: Just read your other posts and realise you’ve got it figured, and probably disagree with what I’ve said here. No probs.

But with her, if you dare to say, for example, that the challenges are significant becuase he's got these other issues going on plus he's probably ND, she will snap that he is "definitely got ADHD". which really, we don't actually know even though we're all pretty sure.

I completely get this. I have a relative who is currently on their 3rd attempt to get their teenage child an ADHD diagnosis. But there are other things going on as well. If anyone dares suggest that certain things are a knock on from anything other than ADHD they completely go off on one that it IS ADHD, thank you very much. The official diagnosis will somehow make everything ok apparently. All problems will instantly be solved. I know from experience with my own kids and their ND diagnoses that that isn’t the case. It drives me mad even though it’s not my circus or my monkeys.

Maybe because you think she never care when it was your DC but now shes all about addressing discrimination when its her own child?

What I think you feel may be a sort of jealousy and resentment that she wants/gets some accommodation and support for her son even without diagnosis whereas you had to fight for diagnosis first to be able to get/ask for yours?

You may also feel irritated that she's following the stereotype of (self-diagnosed) ND parent who want to bulldoze their way into getting support just because they say so. Perhaps that offends you?

It sounds like you all convinced her that her son is ND like yours so she's decided to run with it and not go through any official channel. Have you asked her for reasons why she hasn't started the process of getting him assessed? Perhaps she feels he doesn't need it if he can already get the support he needs without it? You'd have to know her reasons for sure to be able to judge her on that.

Not everyone wants to medicate their child regardless of diagnosis and in the uk at least it’s not seen as the ideal response to nd.

The sad thing is that ADHD is highly treatable with medication. Obviously you can't get the medication without a diagnosis. Why would any parent who is convinced their child has ADHD not get treatment for their child?! Absolute madness!

It’s usually schook that pursue diagnosis. Have they suggested it and sil/bil have turned it down.?

Do you feel like some competition with sil regarding your dc?

Or are you frustrated she’s not pursuing diagnosis and linking that to your son in some way?

I get what you mean OP. The diagnosis doesn't change the child, she needs to be putting the work in based on his behaviour whether Adhd or not. My DS manages himself very well as a teen and it annoys me sometimes how people see him. They don't see the shit I put up with for years and years, the books I read and courses I went on, the strategies I had to implement from breaking down sequencing steps in everything to colour coding things, the list goes on. He had high sensory issues, I had to work up to everything. For example visiting the barbers 3 times before someone could touch his hair, watching videos of barber shops, using a hairdryer at increasing volume and frequency around him so he wouldn't have a meltdown when we got there. Same for going to restaurants, shops etc. It was such hard relentless work, so yes it annoys me when parents do nothing and expect everyone else to adapt. I'm all for some reasonable adjustments of course but not when it infringes on other people's wellbeing.

she just wants to look good /make herself feel better.

I just hope you're not letting her child distress your child. If she won't/can't parent him it's not your job or your family's job to tolerate intolerable behaviour. It actually doesn't matter (at all) what the reasons for someone's unacceptable behaviour are. That matters only to their caregivers and themselves, their health team etc. What matters to other peoople is not having their own child negatively impacted by other children. Could you be irritated/offended that he is causing disruption to your own family?

It is NOT your job to care for someone else's child, no matter who they are and no matter what the reason. There is nothing remotely unkind or untrue about that. It is NOT your job to tolerate intolerable behaviour and particularly not on behalf of your children. It is your job to protect your own child/ren. Always.

Self-diagnosis is really common in the ND community, but as an AuDHD adult myself, it irks me.

I don't want to be a gatekeeper and I'm only too aware of the difficulties with diagnosis. I wouldn't normally say anything in real life, but I'm aware that I feel a frisson of irritation when met with a definite declaration of neurodivergence that isn't backed by a proper diagnosis.

I have no issue at all with anyone who says "I think/believe that I/my child is probably autistic/ADHD". In fact, I have a lot of friends with ND-diagnosed children who then realise that they are probably also ND themselves.

I think it's multiple factors.

Firstly, my autistic brain likes things to be correct. And a declaration that you ARE DEFINITELY autistic/ADHD etc when you haven't been diagnosed is nothing more than an informed guess. It feels "wrong" to me to tell people that you have a condition that not only overlaps and mimics other conditions, but is also quite challenging to diagnose. You wouldn't do that for any other medical condition so why is it acceptable for autism/ADHD?

I think the increased awareness of ND conditions means it's almost become trendy with loads of TikTokers declaring themselves as ND for a whole host of ignorant and uninformed reasons. And that type of ill-informed behaviour reflects badly on genuine ND folk because we're then all assumed to be charlatans - and we get enough of that already.

Thirdly, if it's about a child, there is in the instinctive reaction that you need to put in the bloody work to get the child what they need! Support should be based on need, but we all know that having a proper diagnosis makes it so much easier to qualify for support, and to get people onside who really believe that your child is ND. It isn't easy pulling everything together to get a case seen so parents side-stepping that feels lazy and not in the best interests of the child. And yes, that's frustrating, unfair, and really not OK.

Lastly, some self-diagnosed people bandy their declarations around like flag, waving it in everyone's face and demanding that excessive exceptions are made. It's a curious type of behaviour that you see far less frequently in the parents of children who have been diagnosed. I don't know if it's a lack of understanding or they're just trying to convince themselves, but telling the world and their dog about your child's neurodivergence is unnecessary and really encroaches on your child's right to privacy. And yes, unfortunately there is a small minority of parents who use their child's neurodivergence as a way of getting attention for themselves "see how difficult our lives are". I have seen Facebook posts from parents who have shared videos of their child in a meltdown or photos of bruises on their arms to prove how hard life is for them. Just fuck off! A neurodivergent child isn't an opportunity to get attention.

All of that aside, I believe that behaviour is communication and that every child needs to be listened to, and appropriate support provided, regardless of diagnosis. Your nephew sounds as if he's having a really hard time so he needs to be on the diagnostic pathway so medication can be considered. I'm not sure I've nailed explaining the issues with a lack of diagnosis - and I'm not 100% sure I really know entirely what it is myself. But at its core, it's frustrating because it isn't putting the child first and has the potential to damage the rest of the ND community.

Or she might not want to pursue a diagnosis?

Id be bothered that she was expecting extra support when its demanding others make concessions, but wont even get the ball rolling with diagnosis, which would mean her child could then trial medication if she feels that it needs a lot of managing.
I think you should try and bring it up in a kind collaborative way, about the benefits to him of getting a formal diagnosis.
He is still at school, so it would usually start via the senco at his school. You could offer to go with her for a meeting maybe, since you are a family member and you have been through some of it. Ask the senco if they can refer you to paediatrician or how they would do it in your area.

She might just not know where to start, or she might be feeling judged

I think that seems a reasonable explanation @OriginalUsername2 .

she seems to think her son deserves all this special attention and dispensation and she's happy to refer to him as having ADHD when she hasn't even bothered to get him diagnosed.

By 'all this special attention' and 'dispensation', do you mean support?

Because if he needs support, he's going to need it with or without a diagnosis.

Her child receiving support, doesn't take anything away from yours so I find all of this very odd.

How old is he out of interest?

Maybe you feel offended on your son’s behalf because her not wanting her son diagnosed suggests that she feels there’s something wrong with having a diagnosis. And that suggests that she thinks there's something “wrong” with your son and that hurts. If that makes any sense.

I hate the expression “in denial” it doesn’t sound like the parents can’t see his differences at all (which is what “in denial” means) it reads far more like they have decided that formal diagnosis isn’t in his best interest. It’s a perfectly valid and understood path, and definitely doesn’t mean they don’t care nor that outcomes will be worse. It’s always hard to see people make different decisions to you but he sounds like a very different chap to OPs son.

For me it’s this.

it’s must be really irritating to watch this car crash.

his mother is still in denial. She is saying “he is ND so ALL OF YOU must do something but I don’t need to do anything”

she doesn’t want to do the hard work that you and the many of us have done and will do.

irritating and grating.

I guess you have to take a step back and not get overly involved until his parents do more. Don’t get sucked in. It’s a shame for the poor boy but he is not your responsibility.

it sucks. When you know there is so much to be done and that his parents really ought to be stepping up. But nothing you can do unfortunately.

Sorry I’ve just seen this - explains more!

Is it because they were not supportive of your child’s diagnosis/ struggles and now you think it’s a bit cheeky that they want the world to adapt and show understanding about their DC’s? Or they are happy to label DC as being ND (when it comes to dealing with the school) but are in denial and won’t refer to them as ND when around friends and family hence why they won’t seek professional help?

(I only ask because I’ve met a few parents of ND children who have experienced similar - I could be completely wrong here!)

Further thought - is your “offensive” that you think she’s maybe fuelling the very damaging stereotype and misconception that ADHD is just “naughty boy syndrome” by just using it as a blanket excuse, and not trying to pinpoint or address her son’s actual needs?

I can sort of see that but I still think offensive is not quite the right word.