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

[Sunat45degrees]

My DS has ADHD and SPD (this is relevant). It has been a long road but he's doing really really well now and is settled in high school etc.

we all believe nephew has ADHD (at least) but for many years SIL and exBIL were in denial. They now accept it but after more than 18 months, still haven't even added him to a waitinng list for assessment. Meanwhile, his behaviour and outcomes are awful and SIL is furious that people are not more understanding of his ND. She regularly rants about how, for example, after school club is refusing to allow him come in the afternoons as his behaviour is so disruptive as she feels this is discriminatory and they need to put things in place to support him.

But I also am finding it sort of annoying or offensive or triggering (I can't quite work it out) that 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.

I can't work out if I find it offensive because she seems to think she can ust decide he has it without an actual diagnosis. Rr if it's because she's using it as an excuse for behaviours that on our side we've worked so hard to manage. Is it because I had to advocate so hard for my DS, over and over again and yet all she's doing is complain without doing anything? is this just classic irritation with in laws?

Or am I right to be a bit offended by this? The problem is I think he DOES have adhd. I also think he might be autistic too, but she doesn't want to hear it. So when she says he needs support, I agree. But his behaviour and attitude is so different to DS and she seems to think it's a blanket "get out of jail free" card, and she hasn't even had a professional assess him.

Or am I just being a bitch?

this is a weird thing to get wound up about. In what ways does this impact you?

At very least she should have him on the pathway for a diagnosis - it's a long road to get a diagnosis but not many places will put things in place to support without either the pathway or the actual diagnosis. She can't just slap a label on it without a proper assessment. She needs to get the wheels in motion if she wants her DS to have adaptions in place.

I get it. I have a DS now 15 years who was diagnosed at 3. I have been in the trenches since then.

She sounds angry and at sea. We were all there at one stage. So I have sympathy for that. But she needs to read the fucking room.

I'd tell her tbh.

It’s all very well her saying that the afterschool club must put support in but support costs money and where does this come from? Should all the other parents pay extra? Even with an EHCP the funding is normally just for core school hours, sometimes those with pupil premium funding can use it for additional support at after school clubs but it’s at the discretion of the school, it won’t fund much and he’d have to get PP first

Maybe she is just scared? It’s a big step and maybe she is worried that they will say he doesn’t have ADHD. Maybe she is worried about the long term

im not saying her approach is right but maybe she needs supportive guidance rather than judgement

YANBU. It sounds like she’s decided she has diagnosed him without bothering to have him formally assessed and get the support he needs. Have you tried asking her how she is getting on with the assessment?

Well it’s her nephew so presumably she cares about the child and his out comes, but also can relate because of her own child’s struggles and her journey to get a diagnosis and support.

Not sure if you are aware, but sometimes other people’s actions can trigger an emotional response in ourselves and it’s okay to explore that.

Are you just really irritated that she's failing her child by not getting him a diagnosis or support?

The fact that she's wants all the dispensations that benefit her while doing nothing that supports her child would grate on me too.

I am 100% clear on where I'm irritated - she is absolutely failing her child and that frustrates me. So yes, I am annoyed about that and while I'm deeply sympathetic to the feeling she's experiencing where taking the next step is too hard, it does frustrate me becuase he is the one suffering.

The bit I'm less clear on is this feeling of being offended. I'm not someone who offends easily and am usually more of a "water off a ducks back" or a "I'll roll my eyes and make a mental note not to hang out with you" kind of person.

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 am starting to think that the feeling of being offended comes not so much from the lack of diagnosis, but the sense she thinks it means she doesn't have to do anything else if he has ADHD. LIke it's just "one of those things" and that diagnosing is no big deal? Perhaps because I have spent so many many many years fighting for DS? As anyone with a ND child knows - the need for constant advocacy, for constant support, for constant adjustments, is relentless.

What I do know, but can't quite articulate even to myself, is that this sense of being "offended" is linked to DS. Which is odd because yes, we have fought hard for him, but I would argue that even before he was diagnosed and medicated and when we were struggling, his struggles are actually not as severe as his cousin's. So why am I offended on his behalf?

I do not like not understanding my own reactions.

Support isn’t and should never be diagnosis based, so I’m not sure why you feel DN has to be diagnosed to be allowed accommodation. Surely the decision to be assessed or accept diagnosis must be made in that child’s best interest and I’m not sure it IS uniformly the case that dx is the optimum path?
I find your feelings hard to understand. Why are you surprised that your SIL doesn’t welcome and embrace your armchair diagnosis? I’m not surprised she’s a bit bitey if you are suggesting disorders. Why would you do that?

I wonder if the irritation is that she almost wants it both ways - she wants the understanding and the individual treatment but she doesn’t want to do the hard work of actually getting the diagnosis and addressing what is going on. I suspect I’d feel the same in your shoes

Accommodations are not a prize for diagnosis.

I would find it very annoying that she isn’t even seeking a diagnosis.

Yes, school and other settings should put accommodations in place if the child manifestly needs them, regardless of diagnosis. But for a parent not to even start down the pathway in this situation seems irresponsible.

And if you’re helping your son to cope in the actual world we live in (my son has diagnosed ADHD so I know this is an uphill task) it would frustrate me to see her failing her son by just using it as an excuse and not helping him.

I wouldn’t necessarily go for “offensive” as my first reaction, or even annoying, but yes I’d find it frustrating. And I’d be concerned for DNephew most of all.

Edit - I can see I’ve used annoying in the first line, but as I thought about it, it’s not quite the word I want.

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.

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!)

Sorry I’ve just seen this - explains more!

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.

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.

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.

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?

I think that seems a reasonable explanation @OriginalUsername2 .

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

Or she might not want to pursue a diagnosis?

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.