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

There is no situation where refusing an assessment suits the child. None.

I have an autistic kid. If thats relevant. I would 100% say it to your sister. Its about the child, not her parents. We know later mental health difficulties can arise for these kids. She needs support and if they are neglecting that youre, in my opinion, obligated to advocate for her.
Probably wont be well recieved though.

Hmm. I've been in this situation and it did not go well. I have an autistic child and when relative told me they were struggling with their own child because of x and y (very familiar) I asked had they thought about Sen? Basically got an earful back about how awful it was to suggest that blah blah so then I was pretty offended, having an autistic child myself.

If you think they won't take advice on board don't say anything.

If school are saying something it must be severe. I had years of she's just headstrong/bored as she's autumn born and bright/they're all emotionally immature after covid etc before school referred my DD after she eventually couldn't mask any more and had a meltdown in school.
Saying that if school have said something they already know, so I'd probably go down the Well it wouldn't hurt to do the assessment to rule it out route.

If she was a happy, ‘quirky’ child I wouldn’t. But she’s so unhappy, has no life really as they sort of hide her away and now seem to think they can ‘punish’ her out of it.

I think PP is right about the need to advocate for her being greater than their need to bury their heads in the sand

OP - why not read up on selective mutism on SMIRA’s website? The support organisation for it.

As I understand it, selective mutism is more usually an anxiety disorder.

I do also agree with this in lots of ways.
But Kids who struggle to find their way in society should also be supported to find ways to manage and negotiate the world. Celebrating and accepting their personalities is very important but we all have to make compromises to co-exist with others. Children need to learn how to navigate this

I'm a parent of an ASD child and I wouldn't.

They already know deep down, and I would be very surprised if school aren't already taking to the parents about it and putting wheels in motion.

There was a 3 year delay between diagnosis and us telling wider family. They may already be processing a diagnosis, it puts a lot of strain on a family, and that might not be at point where they need any suggestions, any more critique of their parenting skills etc.

Maggie Johnson is a specialist speech and language therapist, a leading expert on SM in the UK. I’d look for any books she’s written on it. (I’ve attended a workshop with her, and she is very nice)

Here is a link to some more information on it

www.kentcht.nhs.uk/case_study/learning-talk-without-fear/

I want to add that when we did tell wider family, it was in order of how supportive we thought they would be.

Some have made the effort to discuss planets, join online Minecraft sessions, sit and colour in together, others have tried to buy footballs, take him to amusement parks and change him to their idea of normal. So you can support the child by showing an interest in her, showing love to her in this way will help the parents more than you will ever know.

Our postman shows more understanding of our son than his own grandmother

Really? There are no children who would are experiencing other difficulties that make it not a great time to hear they are disabled? There are no services that are limited based on diagnosis (eg both SALT and CAMHs have been known to exclude autistic people from their provision)? There are no schools where diagnosis would be detrimental to entry (eg we don’t have provision for SEN of that degree). There are no cultures where a dx of any kind would limit and negatively impact social status?

I think you REALLY have limited understanding of this situation as does @Moonicorn who has listed a lot of “symptoms” of what she thinks is autism that are clearly connected with SM without any that aren’t.

@Itisbetter

Yes really.

Knowing that DS is autistic makes it easier to understand his world. At present, he's finding y7 a demanding transition and hasn't made friends yet. Knowing that this is part of the way he's wired takes some of the pressure off. He will make friends in his own time and there's no need to push that where it would concern me more with DS2. It makes it easier to read and respond to what he needs and have conversations with school about it. NT based approaches could make the issues worse.
Diagnosis hasn't been about what's "wrong", it's about recognising and supporting who he is.

I would not initiate a conversation where I suspect Autism/ Neurodivergence. Following up in converstation where the parent suspects/ school suspects is different. The problem here is that the parents are so anti-assessment. While schools don't need a diagnosis to respond to needs, it certainly makes it easier, and they do need parental engagement.

I've long suspected a friend's child is autistic for a multitude of reasons, their communication level, social skills, diet (sensory input), "energy" levels, habits. There's never been a natural opening to say it, and the parents just aren't ready to go down that rabbithole. I've always been open about my DS, and it can take a mental leap to accept that your child's path in life is on a bit of a diversion from the regular routes.

It sounds here like the child is being massively failed by their ignorance.

Also "S/he's just like..." is often a sign that the condition runs through the family, and they are often familes that don't/ don't want to see it transparently.

I do understand what you’re saying and you sound like a fantastic mother to your son.
But why is it allowed to be a choice.
My beloved eldest daughter had a seizure at the weekend. I’m not really ‘ready to go down the rabbit hole’ to find out if she has epilepsy or a brain tumour but I don’t get to just opt out of that. Part of being a parent is facing up to some really difficult and heartbreaking stuff. You can’t ignore it to the detriment of your child.

I’m not sure why school would be pushing for a diagnosis. Have they said what support it could allow her to access if she did get it? Have they checked carefully if it would exclude her from any that might be helpful?

What's the deal with you repeating that children will be refused help with a diagnosis?

@Smartiepants79 I’m so sorry you and dc had that experience. Having epilepsy just means you have had two seizures it’s a much more flubby diagnosis than people imagine. Do post on the SN board for some support it here are several posters who’ve been in the same place.

I think in this case it’s more like people are suggesting the little girl has epilepsy because she fainted?

Because some areas access to some support is limited if you have other diagnosis. Are you based in the uk @rainbowtwist ? It’s not a new thing. It’s that communication, anxiety, etc are deemed to be “part of the autism” and so too difficult to support. Which is fine unless your child’s life is being limited by crippling social anxiety, or ocd, or speech or language delay which could and would respond to therapy.

I'm asking what it is, exactly, that a diagnosis prevents a child from accessing?

Yes I live in the UK but that's not much relevant I'm asking you what you are saying, not telling you anything.

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’

I think all you can do is politely avoid agreeing and ask why they think the school is saying this.

I image the school will have experience of this situation before and will be slowly dealing it and they should be meeting the child needs even with out an assessment.

I suspect doing any more will lead to alienation and anger with you - they may have suspicions but aren't ready to hear yet.

I wouldn’t suggest it was anything (autism etc) because I don’t have the expertise, but I would suggest listening to the school if they’re suggesting an assessment.

I would argue that an assessment wouldn’t hurt and if there were nothing to diagnose, there would be no diagnosis.

Not speaking to other children is such a huge red flag that something is up - either a social communication condition like autism, or maybe even bad anxiety/a mental health issue that could get better with therapy.

But yeah frankly, it isn’t about their feelings. And true, they might not like it.

It’s because you’re worried about your niece, but I think you should avoid any armchair diagnosis from you and just say you think your niece needs to talk to someone about what she feels is going on.

Unless you are an expert in the field of paediatrics, specialising in SEN’s keep your beak out.

I wouldn't offer unsolicited advice but, if they are talking about it, I think it is ok to comment.

The referral/assessment process takes a long time - years around here. I would say something like 'it might be a good idea to get the ball rolling on a referral though. If she's assessed and found to be NT then that's fine.' Or maybe 'it's quite hard to get a referral though you know, so if school are offering...'

It’s relevant because I’m not sure how much of what’s been said you understand.

So here (SW) there is no SALT input for children with diagnosis and access to specialist schools for SL delay or disorder was dependent on not having autism. Here children with ASD could not access CAMHs for OCD.
So if I had a child who was SM (I do) I would be very cared I knew what the criteria was for support in my area before I considered diagnosis. I’d as SALT (number should be available from your GPS receptionist) or CAMHs what the path to treatment was.
In some schools a diagnosis would benefit the child because access to a good proactive CIT (Communications and Interaction Team) who can advocate and lead provision is often triggered by a diagnosis.

Its not a one solution fits all.