Child DLA 2024 selective mutism

[Teete1994]

Hello I’ve got a daughter who’s nearly 10 years old she’s got selective mutism but undiagnosed, she’s gone all the way through primary school (we are in the uk) not speaking a word to her teachers, her school didn’t really know about SM. When my daughter is at home she’s the most chattiest girl ever but as soon as the in unfamiliar surroundings or someone she’s not comfortable is around she goes very quiet and very clingy to me, her school have put support plans in place to try and encourage her to speak to staff but over the three year they’ve been in place she’s never spoke. My daughter does have a small circle of friends who understand her and they include her in everything, she’s the most independent little girl but once she’s outside in supermarkets or the local shop she’s like she’s attached to my hip but in busy supermarkets or busy places it’s a big fear of mine if anything was to happen to her as she can’t ask for help. Her teachers seem to be trying to push a bit more for her to speak which anxiety wise it’s starting to cause my daughter chest pains she wants to speak but she physically can’t, is SM undiagnosed alone something you can claim dla for

It's not about diagnosis but you do need to provide evidence. My autistic DD is selective mute but it doesn't form part of her claim as I have no evidence to back it up.

I could have wrote this about my son almost word for word! He has never ever spoken in school, also 10. Other than the fact he has no friends at all not a single one, school have moved his class to help but nothing works he won’t speak in school because it’s “too late” his words, I haven’t claimed dla personally as outside of school he is just a regular kid in fact he is extremely loud 😳

It’s absolutely heartbreaking for them, my daughter got moved classes to be with her circle of friends to try and bring her on more but that didn’t work. Yeah my girl is so loud outside of school but mostly at home if we are out shopping or anything she will stand close if she wants to speak to me but first she will look around to make sure no one is close enough to hear

I think it’s unlikely you would manage to get DLA unfortunately as you have to be able to evidence that she needs a lot more care than other children her age. Has she never been assessed by an NHS SALT?

I also forgot to mention she has to use special cards in school aswell to try and communicate, so if she needs the toilet she would show the toilet card or if she’s unwell stuff like that, she got referred to CAHM’s a couple of years ago apparently they help with speech and language but we got no where with them they just kept giving the school advice mainly how to support her other than that we’ve had no help it’s just the school trying to put support plans in place so she gets the same education as others but with extra help and to try and get her to speak

Pressure to speak can make it worse. I'd consult with a speech therapist who has a specialty in selective mutism.

My DD has selective mutism and autism. I got a diagnosis by making a parent referral to our local speech and language service. They didn't offer any support other than some suggestions for school. I'm also a primary teacher and have taught children with selective mutism.

I'm not sure what your claim for DLA would be as you have to evidence additional care needs? You would benefit more by making sure she has a personalised plan at school and is on the SEN register so information will be passed to her next school. Have school staff had training in selective mutism? There are some good resources by Maggie Johnson which they should invest in. Have you met with the SENCO? As PP said, it is imperative that she is not pressured to speak. Adjustments that have been made for my DD include never asking for her to be called on in class, always seated with a friend etc.

It's rubbish that there is so little support as it is a condition which can really affect young people, but unfortunately getting an official diagnosis doesn't seem to bring much in the way of support.

I’m actually not sure if she’s on the SEN register that isn’t something that’s ever been mentioned but I will look into that next week when she is back to school, most of the teachers that have taught her they never heard of selective mutism it was new to them apart from one teacher which understood as her daughter has SM too, my daughter is sat with a friend but she doesn’t speak to her either which it would of been ideal if she felt confident to speak to that one friend so her friend could be her voice to the teacher but she does have her own ways to communicate, she also wears a lanyard while she’s in school or just out and about to say she has SM she can understand what’s being said she just can’t respond it helps her so if anyone speaks to her they don’t think she’s just being ignorant and ignoring them

I don't think you'd qualify for DLA on the basis of SM alone. You need to demonstrate you provide care of several hours a week over and above that expected of a similar age child.

She sounds highly anxious. Is she able to articulate to you what she finds so anxiety invoking about school / being in shops? My daughter was diagnosed with autism aged 14, her SM was caused by social anxiety - not knowing what to say and when, and a fear of saying the wrong thing and being laughed at. It took a very astute GP to recognise the signs of autism in her, up to then she was just labelled as highly anxious, very quiet and "young for her age". Not saying your daughter is autistic, just saying something else to research.

It is hard he has never had any friends I feel bad for him and he gets shouted at sometimes in school for not speaking, I haven’t claimed dla as don’t believe he would qualify same as your daughter as the issues you mentioned seem to be mainly in school so no extra care, the supermarket thing may qualify for lrm but don’t think you would get the care component as doesn’t sound like any additional care and can’t get the mobility without the care.

My DS is SM. Didn't even enter my mind to claim anything for him. What would you need the extra payments for?

I always faced negative comments about 'being quiet' throughout school (even in 6th form). Listening and processing feelings and sounds takes so much energy, it's like a surrounding sea.
Then converting thoughts to the right words, at the right time, in the right way, without being judged takes a leap of faith that you won't be humiliated by everyone around you.
It's ok to mess up at home, miss cues, be blunt, be loud. Encourage practise at home and chatting online with friends - it can be easier to write words then say them.

I work in welfare benefits and a child with SM can absolutely qualify for DLA. DLA isn’t based on diagnosis but on the hours of care needed over and above what a child of their age would be expected to need. Not all children with SM will qualify of course but some will.

A child who isn’t able to communicate outside of home can need a lot more care. Especially as there is often wider anxiety / neurodivergence. I presume your dc needs extra care in school if she doesn’t speak at all. Couldn’t ask for directions, couldn’t ask for help if she needed it, couldn’t speak to a shop assistant? These are all things she needs support with that a child of nine or ten could usually manage (eight being the age at which libraries, swimming pools and cinemas will admit a child without an adult, so that is a general bar as to the age these things are expected)

You can be awarded mobility component without the care component. Care in school also counts. As does support to access other activities / groups / hobbies

Yeah my child doesn’t speak at all, in her classroom she has some cards to show so if she needs the toilet or she’s feeling unwell she can let the teacher know but there’s no way for her to communicate if she needs help with school work or if she’s on the play yard or anything, but while she’s out of school with me I’m her voice to shop assistants or anyone she’s unfamiliar with. My biggest fear is being out and about with her and something happens she can’t alert me or shout for help

At her age you would’ve started allowing her to use the toilet on her own and order drinks etc. So I guess it’s worth a try. I would suggest downloading the benefits and work guides from their website it’s about £20 for the year and they have a great forum as well.

Hello @Teete1994 - we're moving your thread to the SN Children board as this section is for paid childcare.

DLA is based on needs, not diagnosis. Although you will need to provide evidence. The Cerebra guide is helpful when completing the form.

Although I urge you to seek more support as well. Request a meeting with the SENCO. The school needs to be providing more support. Request an EHCNA - on their website, IPSEA has a model letter you can use. In some areas, you can self refer to SALT. If you can’t, the GP or school will be able to. And DD needs another referral to CAMHS, too.

My daughter is the same. She’s eight and the school is so ribbish. She’s gets no extra help at all.