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

Have they really refused the assessments though?
They may not want to talk about it, family or not.

But as a mother of an autistic child, yes I wouldn't like someone telling me about my own child.

Given that they’ve refused assessments, it’s not like you would be giving them new information. They know other people think she has SEN and they don’t want to hear it.

I think, unless you have some expertise, it's not really on.

What's your relationship like with your sister? If it'd really good and you're very open with each other then you could ask if school have mentioned anything further about assessment and take it from there. You'll be able to gauge whether to say more based on what she says about school.

If your relationship isn't that good or if she isn't happy with school raising it then no, don't push the issue.

As difficult as it is this not your child or your decision.

You should only say something if you have the direct experience to know. Eg, you're autistic yourself or you have a child who is.

How much do you see her?

As a parent of an autistic child who would never colour, plays appropriately and enthusiastically with toys and is very emotional and expressive-don't say anything unless your opinion is sought directly.

There are more neurological differences than only autism and many of them also have what is called a deficit in social skills as a symptom.

You cannot say their child has a condition, you can express your thoughts that she may be struggling in some ways -IF-your opinion is asked for.

Unless they are asking for advice and showing concern and you yourself have a child with SEN to be able to offer advice, then no I don't think it's acceptable.

her face most of the time is a blank mask - she doesn’t smile, or laugh for example. Just blank, if that makes sense?

Please don't run away with the idea that autistic people feel blank inside. We really don't - we just don't tend to show emotions on our faces. It was a revelation for me to discover, after I joined the gym that people were smiling at me and I wasn't smiling back(!) I only realised because of the mirrors.

I only mentioned autism as that was what the school suggested to them. It probably would go down like a lead balloon, but it crops up in conversation a lot, in the tone of ‘oh guess what the school have been saying about DD now, can you believe it, she’s just shy/introverted/catching up after covid’

it’s just hard as she seems so unhappy and misunderstood and now it feels like they’re starting to ‘punish’ her out of it

I think it hugely depends on the nature of your relationship with your sister. You're not a stranger. You could say diplomatically is it not worth exploring with the school?

It's difficult because it's very unfair for a parent to bury their head in the sand when their kid is suffering but what's important is, is the child happy? Maybe she isn't bothered about friends. Is she doing ok academically?

It's possible when her parents are saying guess what school think that they are actually sounding out what rest of wider family feels rather that making a joke of it. Has anyone actually responded seriously to them when they bring it up? As in asking why school think this, what have they noticed etc.

That sounds like an ideal opportunity to tell your sister you agree with the school that you think there might be an issue and an assessment might be a good idea. You could always pitch it as a way of getting school to stop going on about it.

I think since it comes up in conversation naturally, it’s going to be pretty easy to say - oh really? Well you know it might be worth just getting her assessed, because there are so many different things they can identify now, and help with. In a gentle chatty way, and just periodically repeat it when it comes up.

I think you are correct that something is up and your sister, for whatever reason, isn’t dealing with it. Autism or not, who knows, although if the school are suggesting it then perhaps it is. I would avoid using the autism word yourself though.

I wonder if this is them trying to open up the conversation to see what family think. I would run with it and ask why the school think that, and suggest that maybe it is worth exploring further assessment as you've noticed some things too.

One of my sibling's kids has a visual impairment. I noticed they weren't making eye contact as you would expect when they were about 3 months. I mentioned it to their parents and they said they'd noticed it too but had been dismissed by health professionals. They pushed it later based on the fact others had noticed it so it wasn't just an anxious parent suggesting it and they got the diagnosis and support their child needs.

Ignoring this kind of thing should be considered a form of abuse. A parent isn’t allowed to ignore any other kind of medical problem. If she had a broken leg or poor eyesight or was covered in a rash people would be demanding they do something about it.
Why is this different? Either there is not a problem - professionals will work this out - and life goes on. Or there is a problem and the child can start getting the help she deserves.
This makes me sad and angry.

I think you could say something along the lines of 'well there's no harm in getting an assessment done, it might mean dniece gets a bit more support?'

You can't say 'I think dniece is autistic'

Next time it comes up, I'd suggest getting the assessment done "to get the school to stop banging on about it".

What is your relationship with your sister like?What is your sister's parents and IL's attitude towards neurodiversity ?
Has your sister watched niece interact with her peers?
When my sons were younger their school had them in nurture group to improve their social skills and confidence. They are very sociable teens now and you'd never know that they needed support when they were in Reception.
I would be very concerned for niece. The social side of school is so important as a teen and quite frankly is the main reason why my son's attended secondary school without any issues like school refuse.

It's really difficult. I think you need to question your own motivation and where you fit into the picture. But as her aunt and wanting the best for her, then I think you can definitely keep the topic alive, yes. I like the approaches above re avoiding any specific diagnosis but asking about further assessment/help.

A friend of mine had a way of raising concerns about her child while shutting off comments - 'I used to think ds had [diagnosis] but I don't now'. To me it was absolutely obvious that something atypical was going on, though I didn't know what. I didn't say anything until she said that another professional had dismissed the idea that her child might need someone in my profession, for completely wrong reasons. I then felt able to say that there were many things my profession could help with, and if she ever thought about getting a referral, it couldn't hurt.

Good luck. It's very sensitive and very difficult.

Unless your an expert in autism I would stay well.out of it ,I wouldn't have wanted any " advice" before my son was diagnosed
my sister worked as a primary school teacher ,for 25 years and now works in early help.,she knew very little about autism beyond the very basics
And only through personal experience of my child who is severely autistic now has more experience.

I think it’s very unlikely they’re secretly hoping for opinions, just knowing them as I do and how they say it. I think they ‘know’ deep down but they’re reassuring themselves there’s nothing up, plus ‘explaining away’ why my niece won’t speak to us or play with our kid.

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.

His mum also said she thinks my daughter is the one with the ‘problem’ because she ‘talks too much and is always excited and little girls should be quiet’ (won’t repeat what I think of her!!).

Some good suggestions here on what to say, hopefully one of them will feel right at the right moment..

My family I would sit them down and ask what can the assessments pick up, if she really is NT, nothing, if she's not NT then they really would benefit from help and support and so would she. I think if it's as bad as you think it is I'd definitely put it out there and bugger the consequences. Poor child, are they embarrassed or ashamed of the fact she might not be NT? Why do you think they are not getting the assessments done?

I'd approach it from your nieces point of view.

How must it feel to be overwhelmed with life, the world, school etc. she tries so hard to remain composed at school and when she's at home in her safe place she crashes. I'd try and get your sister to see it like that.

@PermanentTemporary i suppose (along with my genuine concern for DN, it’s really awful seeing a child that unhappy), it’s just getting harder and harder to interact with her which makes it quite difficult for the family to know how to tread the line of not ignoring her but also not highlighting her issues. DD is also starting to cotton on that something isn’t typical and it’s hard to explain why her cousin who she is excited to see, doesn’t want to play with her or speak to her.