To ask if anyone has experience of mutism and secondary school?

[PhoebeesMum]

DD is 11 and heading to secondary this year.
She has ASD and mutism won’t talk to anyone outside of her immediate family or immediate small friendship group.

Conversation with adults including her teachers is non existent. She’ll answer with a nod or a single word answer if asked a direct question but that’s it .

She won’t ask for help if she’s struggling with work , she is also too nervous to ask to go to the toilet . She’s been offered lots of strategies and offered cards to talk but she refuses to do anything that will draw even the tiniest bit of attention to her . She is unable to ask for lunch or pay for things in a shop herself she’d just not do it .

She struggles lots with anxiety about the unknown, change in classrooms, not knowing what to say to peers and is not interested in social interaction .

We’ve already gone through periods of school refusal and I really think this is going to happen in secondary. I’m starting to panic . I think she’s going to be an easy target for bullying

Does anyone have a child similar to mine and how did it go in secondary school? She’s the eldest of three .

I’m a secondary school teacher and have taught two children with selective mutism over the last two years - one in Y9, one in Y7.
My experience in a large, suburban secondary is that the school should be set up for this. I’d expect to have contact with the pastoral team before the start of term to talk through needs, preferred seating partners and people through whom they prefer to communicate etc. If you have an EHCP this will be handed over and your child’s form tutor or head of year can then contact relevant teachers to let them know the situation.
In terms of teaching, each teacher should have ways of still monitoring progress without verbal comms. Thumbs up/down questions, a sheet of paper for written notes and answering through a friend all work for me. Ironically lockdown has been brilliant for one of my non-verbal students as they’ve been using the Teams typed chat facility to talk to me and their classmates. I’m hopeful that they may wish to speak when we return to school (but it’s ok if they don’t).

Thankyou that’s very helpful. Unfortunately she doesn’t have an EHCP as we don’t “qualify”. School have described her as quiet but her diagnosis report states mutism and school say she manages fine in school with some intervention around transitions.

As above I'm a secondary teacher and have taught many children with selective mutism at school.

In terms of practicalities:

1. Getting lunch - in my school she can be given a lunch pass due to SEN which means she gets her lunch before others a skips the queue.
2. Asking to go to the toilet - most schools have toilet passes and with those she could leave at any time to go to the toilet by holding up her pass (I have a few that don't even need to ask)

If she can nod and shake her head that will be great as it means she can answer questions. I teach a student in year 7 now who has selective mutism (speaks to no one at all) and her friends make sure that she is not left on her own in school in case she comes across teachers who don't know about her mutism.

I've found from family members that in primary it is VERY obvious if someone doesn't speak or struggles, but in secondary it's just accepted that everyone is different. My Niece has a bad stammer and she was bullied in primary but in secondary has had no issues at all.

I taught a child I knew (my dc went to school with him) at secondary who was selective mute - mum was incredibly concerned about the transition.

Please contact the SENDCO at the new school and request extended transition - visits (covid permitting) and certainly a discussion and a marker around the mutism. Being put with friends initially can be hit and miss - it may help in the immediate start but result in very small friendship groups which are still subject to the usual teenage ups and downs. You may find (as was my experience) that with the right support and transition experience, that starting a new school is an opportunity to make a fresh start and break away from some of the patterns/relationships/barriers that are limiting your dcs speech.

I second what pp said about big issues in primary disappearing at secondary.

Yes my DD has SM. She is in year 10 now and has no EHCP. The whole secondary school has been a mixed experience. I agree with what much of what the secondary teachers on this thread have already said. We contacted the school before she started and I would recommend trying to have a teacher you can contact easily at the start of term with any issues. For us, the school were great at anticipating the obvious issues but inevitably there were things which no one had thought of, which caused our daughter anxiety. The school didn’t have much experience of detailing with SM and so it was a learning experience for all of us. Having one contact and her email address meant we could address any concerns immediately, to avoid our DD’s anxiety increasing and, as is the case with SM, the issues that arose were usually very easily sorted once the school know of the problem. I think having an open line of dialogue is critical.
Make sure the school know what works for your DD. E.g. many teachers assumed that she would be able to use cards, whiteboards etc. instead of speaking, but for our DD this only works if other students are using the same methods as she hates appearing different in any way.

There have been issues - friendships change (as for any teen!), substitute teachers are not informed, some lessons are problematic e.g. drama, foreign languages etc. We have always tried not to rush in all guns blazing, at the first sign of any problem and have tried to be ultra diplomatic. However, we have always found when we have reported issues that the school have investigated any problems thoroughly and been very supportive. Feel free to PM me if you have any questions.

Who told you DD doesn't "qualify" for an EHCP?

If it was the LA did you appeal? Many parents are refused but appealing has a high success rate. If it's the school don't let them put you off. You can apply yourself.

For a needs assessment the only criteria are a) has or may have SEN and b) may need SEN provision to be made via an EHCP. DD meets that threshold - she has SM, is unable to properly access education, engage and communicate at school and there has been school refusal. And other test (must be 2+yrs behind, school spent £6k, 2/3/4 assess, plan, do cycles...) is unlawful.

I've even got a selectively mute student through the speaking and listening part of Functional Skill English, at level 3!

FE Colleges are quite adept at managing to help too!

You will need SENCOs onside and she will need to have a small group of friends she will communicate with.

Best if luck to her 😃

Thank you so much for the replies . I’m just in the middle of bedtime for the baby so I’ll read properly later .

@10brokengreenbottles would you mind elaborating on the second test for the EHCP? That’s exactly why school have said we won’t get one because they don’t spend that kind of money supporting her .

Did you mean the second test is unlawful ?

SM absolutely does qualify for an EHCP. You need to appeal this.

Dd is in Y9 and sounds similar. She does have an EHCP though. She's not behind academically or expensive but she needs help in certain areas and without a number of specific adaptations will not cope. School refusal being the end result.
All her regular teachers are aware that she won't speak and it's only occasionally we have an incident. Her classmates are now more likely to intervene when they see her start to panic.

Apologies, my pp should have said "Any other test..." not "And other test..."

The only legal test for a needs assessment is
a) has or may have SEN, and
b) may need SEN provision to be made via an EHCP.

Any other test is unlawful. The school absolutely do not need to have spent £6k. That is a myth LAs and some schools like to perpetuate. Yes, it is easier if the school have given a high level of support, but it is not essential and it is possible to get an EHCP without the school having spent £6k or supporting the EHCNA application. A needs assessment now should consider transition to secondary, too.

Apply for an EHCNA yourself and appeal if refused. The SN section is brilliant for support, as are IPSEA and SOSSEN.

Hi OP, I have a Year 6 DD, diagnosed with ASD and Selective Mutism. Managed to get the EHCP last year, I requested it, not the school; school actually told me I had no chance of getting it, but I did. Initially the LA turned down my request for an assessment ( this is apparently standard procedure) I then appealed and they agreed to assess. She got it in the end. Your DD is vulnerable, esp as she struggles to ask to go to the toilet. What if she felt ill, could she tell a teacher? She is struggling to access the curriculum. You need to try again for the EHCP. I empathise with how stressed you must be feeling. Our girls are so vulnerable. I am also aware of the utter shit storm heading my way ( and probably yours as well) what with ASD, puberty and the usual teenage angst, this is why you must try again to get her needs legally recognised. Look on the IPSEA website. Start reading up on EHCP need assessments etc. Girls with autism fly under the radar and their needs do not get recognised. Good luck!

Op, does she explode when she gets home from school? My DD stores up all her frustrations from school, presents as very quiet there and then downloads onto me once she gets home.

Wow thank you everyone I had no idea we may actually get one. It’s always been very frustrating as when an EHCP was brought up on many occasions , we were shut down saying we have no chance.

Based on this advice , I’ve never actually applied as we were told no chance whatsoever and DD has not been assessed by an Ed psych ever as she doesn’t display any learning difficulties. If she’s struggling with the work , she will just sit until she writes something or doesn’t finish .

We get explosions at home with shouting, screaming and major anxiety. We’re awaiting CAMHS referral as the anxiety is so bad. I’m really dreading how secondary is going to affect her mental health . There’s no way she is going to cope and I’m terrified for her .

Homeschooling is a disaster as she refuses to do a lot of it but also refuses to go to school under vulnerable provision .

Is it worth applying this far at the end of primary for an EHCP? I can’t imagine them getting her assessed in time if Boris doesn’t open the schools .

I’m quite cross now knowing I’ve been fobbed off. I did look in to it myself but having been told outright we have no chance and no school support I didn’t end up trying .

I was told exactly what @10brokengreenbottles has listed : not enough money spent, not enough one to one needed and so on .

We had the £6K myth too. I believed it for a long time too.

Yes, apply now. If you don't need to appeal the process takes 20 weeks. The timescales are set in law. The Covid amendments that relaxed the timescales came to an end in September, so LAs can not use Covid as an excuse to break the time limits.

The first stage is your LA has 6 weeks from your application to inform you whether they will assess or not.

A needs assessment will include an EP assessment, you don't need one prior to applying. It can also include a psychiatrist or CP assessment. If one can't be provided within the timescales via CAMHS the LA must commission an independent assessment.

The explosions at home are an indicator of unmet needs at school, poor DD is using all her mental resources masking.

Unfortunately children whose parents know the LA's statutory duties, can fight and navigate the system get better support.

My school has a number of pupils with mutism, most of whom do not have an EHCP (the one that does is because of their other needs). We also have a number of pupils that were previously selectively mute in primary but are no longer. As the poster up thread mentions secondary schools are very different from primary schools, and children change so much in KS3.
Sometimes I find a child is labelled in primary, and as they grow and change they cannot escape the expectations that staff and peers have of them and their behaviour.
I have seen so many times a fresh school be a fresh start for a 'tricky' or 'difficult' child

Hi op, I have a 13 y/o dd not diagnosed with mutism but she has asd and cannot communicate her needs/emotions (alexithymia) so will go along with whatever she is told despite it making her incredibly anxious.

For us mainstream secondary didn’t work, we had a 12 month transition with lots of visits to the school but she completely shut down 3 weeks after starting in year 7. Her needs had been overlooked and misunderstood for so long at primary that the damage was done and irreversible. The school was good lots was put in place ready for her starting such as toilet & lunch passes as well as support from staff but it just wasn’t enough unfortunately.

I was also told she wouldn’t get an ehc, I applied myself in year 5 and we got it granted at first look. Took me 5 months to argue the provision wording and then it’s been 16 months of massively reduced timetable mixed with me homeschooling her (plus covid delaying things) but I’ve managed to secure her a place at an independent autism school which she starts at next month.

I would reach out to the Senco at your chosen school(s) and start getting things in place sooner rather than later. It helped that the secondary school had gotten a good feel for my dd’s struggles before she started. Also ipsea has some useful template letters for applying for ehc as well.

One of my daughter's friends is currently going through this. Lockdown has been amazing for her but before that she would spend a lot of her day in the student "hub" where students can work away from lessons. She does have some sort of education plan in place. She has missed a lot of school, friendshipwise she has blossomed at secondary as her parents finally gave her a phone to text (I think they thought holding out would encourage her to talk) the more friends she has (though still very much 1:1) the more she seems to communicate. Obviously school is a busy and overwhelming environment at times but she is quite studious so her parents do feel she is growing there.

This student is asd and mutism is selective and minimal. She CAN express her needs but struggles to do any transactions of day to day life

@100Roses
My DD has alexithymia too .

Schools only have so many educational psychology hours. In out region, and small school they get enough ed psych hours to only assess 1.5 children per academic year for echp - then that leaves no hours left for anything else. So schools discourage parents unless the child needs are extreme or dangerous. You can apply yourself as a parent.

Honestly, my dd (ASD, selective mutism and ADD) did not have a great time in high school

Some teachers absolutely saw it as stubbornness and labelled me as 'over involved' when I'd contact them asking for reasonable adjustments

She started school refusing in year 8 and by Easter the same year she stopped going at all

EHCP awarded in year 9 I'd also been fobbed off up until then and her provision shifted to online

She's now at uni and doing well but it was a very long hard slog to get to this point and it's not an experience I'd want to go through again for any of us

Like previous posters have advised I'd be applying for an EHCP now (hindsight is a beautiful thing) and as soon as you know which high school she's going to request a meeting with the senco to get things in place from day 1