Is it every acceptable to tell someone you think their child has SEN?

[Moonicorn]

It’s my niece (sister’s daughter). She will be 8 in July. What makes me think SEN (autism?) is:
she has selective mutism and has only rarely spoken to another child (in and outside of school). She has no friends and has never had a play date.
she doesn’t play with any toys or seem to ‘like’ anything - as in, ever. She will sit and colour but that’s it. You can’t buy her any presents as she doesn’t ‘like’ anything (hard to explain)
she has huge meltdowns when she gets home from school
her face most of the time is a blank mask - she doesn’t smile, or laugh for example. Just blank, if that makes sense?

Her parents have made a lot of excuses for her behaviour - firstly ‘girls are quiet’ (she has 2 older brothers that seem very NT), then it was COVID lockdowns, now it’s that she’s just introverted. School have suggested assessment many times but they refuse and seem to find it a bit of a joke. It’s getting quite upsetting seeing her struggle in the world without a single friend, and punished for what I think are sensory meltdowns?

would you say something

I think it’s really important you speak to them, for your niece’s sake - it’s not all about and their feelings!

Your niece will certainly know she is different but she doesn’t know why and she might think there is something wrong with her, rather than considering that her brain just works differently to most of her peers.

If school are pushing it, that is a big deal. I had to fight like hell to get school to even consider that my DD is autistic, and that is the case with four other mothers, of autistic daughters, who I’ve met.

Be there for that little girl, even if it means putting your own neck on the line. Maybe send your sister an article about how it presents in girls.

*about them

As a parent of a recently diagnoses autistic girl I think yes you should say something.

If you speak up you are being an advocate for the needs of a child. It seems the child's needs are not being put forefront here if parents are not following up suggestions from school.

Could you suggest to your sister that there is no harm in going through the process and mention a lot more girls are being diagnosed now.

It has been so hugely beneficial for my own child to understand why she finds some things harder than other childreb and has allowed me to learn how to support her and meet her needs more effectively

Im sure your sister is struggling as having a child with extra needs is challenging and emotinally can be exhausting. She would get so much more support if she could engage with what professionals are sayinf

I have a child in my wider family who'll be moving up to high school this year. I, and other family members have thought for years that an assessment is long overdue. Unfortunately, the parents would never consider or accept such a thought and would be horrified at the mere suggestion, however well-meaning. So our worries about the move to high school, silently grow.

Its definitely acceptable to tell someone you think their child has sen. The problem here is your sister has already been told and is refusing to accept or even consider it.
My older child was seeing a student OT and age 10 she was the 1st one to ever mention asd to us. It’s not that we didn’t know there was something but he didn’t obviously fit the stereotype to me. She was nervous about bringing it up to me but I will always be grateful for her. I had no issue him being assessed and he went on to be diagnosed. As soon as he was diagnosed friends, family, teachers were basically implying they had known all along. Yet no one had said to me. That annoyed me tbh. I don’t think I’m unapproachable about such things.
Your niece needs you to intervene if you can. Talk to your sister.

This is good advice from@waterrat
”Could you suggest to your sister that there is no harm in going through the process and mention a lot more girls are being diagnosed now.”

I think telling someone is always going to be taken badly but really encouraging the assessment process is a lot less confrontational and if she really does have additional needs it will be seen by the professionals involved.

If the school suspect it and the parents refuse assessment, the school will go on suspecting it. You could perhaps suggest that they go along with the assessment so that if she is just shy, the school will understand that.

When you have a child, you have hopes and dreams for that child and it must be very difficult to acknowledge, let alone accept, that your child might not fulfil the ambitions you have for them, or be able to cope in the world in the way you expect.

It sounds as though your sister’s MiL is reinforcing that your niece is ‘just’ quiet, an introvert and that it’s normal. If the school feels she would benefit from some assessments, you’d hope they would take the advice, but if you can find a way to approach it, for the benefit of your niece, I would.

Could you say that the school really want to help her make progress and that they want to understand what would help her to do so and that some assessments would aid them with that. It really is all to help your niece and give her the best chance to be comfortable in a world she must find confusing and worrying.

I'd be inclined not to bring it up but if your sister starts talking about it I'd ask why she thinks the teachers are suggesting it. I think you'd need to tread super carefully and know when to back off as it's clearly a touchy subject for them and a lot would depend on how close you are with your sister. But I do know people who have never been diagnosed who show many signs of asd and who have really struggled in various situations as a result because they really lacked support.

It's very sad when parents don't listen to school when they say they need assessment - I can't see what good it'll do @Moonicorn given so many attempts by school have failed but I'd have to say something personally, even if it goes over badly.

I fear they'll have no trouble shrugging it off though.

This. They are being so irresponsible, their daughter needs support.

I would and I have. But I do have some professional experience in the area. And I wouldn't push it if the parents clearly didn't want to hear it.

They spend a lot of time with BIL’s mum, who is adamant there is nothing ‘wrong’ with her grandchild and often says things like, ‘oh BIL was a bit like that but he soon grew out of it, just needed discipline’. I feel like she’s there kind of steering them away from accepting any intervention and they hang on to what she says because it’s what they want to hear.

One thing to bear in mind is that ND conditions like autism do run in families. So when someone's neurodiversity is causing them problems, at school or whatever your immediate family doesn't think you seem different because some of them will also be ND.

they are very lucky school didn't call social services after the refusal

this happened to a friend/neighbour 4 years ago as son was clearly asd and parents buried their head considerably and wouldn't have it.

my ex of 22 years was asd as is my 2 sons(18,12)both diagnosed moderate and im trained so to me it was obvious from 13-14 months and i tried telling them gently but they didn't want to know

within one term of reception(he didn't do nursery) school called them in and explained how he was struggling(he was non verbal and a few years behind so on a 2 y old level) and they were doing a referral.
dad got very nasty and stormed off

i told her how lucky they were to be even offered this so soon as so many want it and schools don't want to know or fob you off and as there is no special school around here(we are rural south wales, ive had to home educate because of this) they need to bite their hands off.

last day of Christmas term parents were called in after the nativity and offered again and head teacher saying his struggles are getting worse.

once again dad got nasty and walked off.
8am the next day SS knocked the door,dad tried sending her away and the worker barged past him.
that day son and baby,who was 8 months at the time went straight on a CPP(we are wales so terms are different) and they were done for medical and educational neglect with the oldest and baby was because of future damage,it took 2 and half years to get SS off their back as it went as far a plo(google it,its severe)and court cases to get son put in care and they won by the skin of their teeth as dad was difficult throughout
son was forced in to an assessment and son was diagnosed as severe asd, development delay and intellectual disability.
daughter was diagnosed last year as adhd and asd

dad still wont accept diagnoses and mum goes through so much stress with him.
ive told her many times to get rid for the sake of the kids and to be caerful SS don't come back but shes a doormat type
kids do get support in school and gets full/high DLA. dad accepts that and both claim carers allowance each and all the UC that goes with it.

What you’re describing is selective/situational mutism though isn’t it? Presumably they know about that as does school. Autism s something different and while it’s true a lot of people who are SM are also autistic it isn’t a given. Why do you think she’s unhappy and why do you think it will be easier for you to interact with her if she has a diagnosis?
It’s highly likely the parents have discussed this with school and her GP, or more.

surely your little girl doesn’t need any more information than DN is who she is?

I think some parents reject the "label" because they feel it's a confirmation of hopelessness and shame... I would approach it with very specific examples/suggestions of which therapy/support/accommodation can help what (especially at a young age), to spark hope and interest in them.

You could say "if she does't have autism then the specialists wouldn't give her a diagnosis just for the sake of it, it would hurt would it? And at least you'll get the school off your back."

But at the very least, why don't you do some research on autism and techniques that may help to interact with your DNiece. That way at least she has somewhere she can be herself and be accepted. It doesn't sound as though you'll be able to change your DSis' mind.

Yes, after years of 'she's just like us she's not autistic' most of one side of my family have re evaluated. Particularly after the second dc was diagnosed. It's a painful journey for a family though.

And at the end of the day it's still a diagnosis of a disability, however much you get a leaflets on the positives of autism and upbeat chat about Austen and Einstein.

Could not agree more.

Optional autism makes me so fucking angry.

I've always thought it really weird my consent and forms signed at every stage too.

When the parents bring it up suggest they go along with the school so it can be ruled out and the school will stop hassling her about it. Hopefully by the time of assessment if your niece is diagnosed they will have had time to process and accept so your niece gets the support she needs.

Everyone is different, but I wish someone had said something to me about DS! I had suspicions but because nobody else said anything I thought I was just being an over-anxious first-time mother.

I was open to the suggestion though, the sister in this case is obviously not.

As the parent of an autistic child, and wife of an autistic man, the more I understand it, the more I think that the way to support this is to emphasise that it is normal - for them. Why not, for now, regardless of whether your niece has autism, reinforce the notion that who and how she is is utterly acceptable and normal, for her. She loves colouring - so buy her art materials instead of wishing she liked toys! If she's OK with having no friends, accept that she prefers to be alone. That's allowed.

We shouldn't try and shove children into one narrow version of normality. We should allow that there are many iterations of it, including deep introversion, seriousness etc. They dont have to be smiley and sociable all the time.

The only reason you would be telling them is to try and pressure them into having her assessed. Why do you think you know better than them what will suit their child? They’ve told you very clearly that they’ve been offered assessment but refused.