Useful update for children with selective mutism

[SMiRAliser]

The UK National charity SMiRA has just published an update today with some advice on what SM is and what support should be offered. Might be useful to share:

www.selectivemutism.org.uk/smiras-statement-on-understanding-and-supporting-selective-mutism-2025/

I thought there was a move towards using the phrase situational mutism.

People can call it that if they want, but we prefer it not to be used in training or by professionals as a "preferred term". This is because the only "official" name and the name that qualifies as a disability - the only name that is an actual defined condition - is selective mutism. If you "diagnose" someone with situational mutism then it's much harder to evidence as a disability for PIP as there is no such official condition.

Selective mutism is misinterpreted but it just means "mutism that is not pervasive; happens specifically". We prefer this to be explained. But obviously if they have the official diagnosis they can then use whatever term they prefer.

The other issue is that a lot of autistic people use situational mutism to describe an occasional inability to speak due to "not enough spoons" or a temporary burnout or overwhelm. This isn't selective mutism, if it isn't persistent and consistent. (Persistent and consistent is in the diagnostic criteria). So we prefer to make it clear that we are looking at two different things (that are probably related but happen at different scales and interfere in people's lives differently). To do this it's easier all round if people call selective mutism selective mutism, and then explain the name meaning and that it's not a choice.

You might want professionals etc. to use the official name as stated in diagnostic manuals, and I agree with that, but you shouldn’t base your arguments on things like benefits or the definition of disability. Calling SM another name won’t prevent someone from getting PIP. PIP isn’t based on the diagnosis. It is based on needs. Claimants don’t even need a diagnosis. Similarly, someone doesn’t require a diagnosis to be recognised as having a disability and protected by the Equality Act.

I am very surprised whoever wrote the page you linked to isn’t more aware of the SEN systems in the UK. The English SENCOP was not written in 2024. In Wales, it is the ALN Code for Wales rather than SENCOP and it wasn’t written in 2024 either. The NI SENCOP was written in 1998 with a supplement in 2005 (there is also the Special Educational Needs and Disability Act (Northern Ireland) 2016, but that didn’t result in amending the current NI SENCOP. Although there will be a new SENCOP at some point with some changes that are already in effect despite not being the legal framework e.g. the change from 5 to 3 stages of support). And Scotland’s Additional Support for Learning framework wasn’t from 2010 (the framework was originally introduced by The Education (Additional Support for Learning) (Scotland) Act 2004. Then amended in 2009. Amended further with the Children and Young People (Scotland) Act 2014 and the Education (Scotland) Act 2016. This resulted in the current third addition of the Additional Support for Learning statutory guidance in 2017).

We understand that pip isn't officially based on disability but on need. However if you are a pip assessor and haven't heard of SM it's just easier for everyone if the condition a person is saying they have is the actual named condition that you can look up and find out about.

Thanks for pointing out the typos and errors on the various CoPs. The England one is a typo that hasn't been caught in edit. The other info we relied on info from associates in those countries. Believe it or not SMiRA is a tiny charity financially run entirely by volunteers and we obviously cocked that bit up, but thanks to you will get it amended.

Bumping this useful guide to what should be done to help people with SM. You can use it as leverage with schools or settings.

Thankyou, this was interesting to read. My 4 year old DS has just been referred for SM assessment. There is not a lot of information around regarding this. DS has attended school nursery for 18 months and has never once initiated a conversation. I am extremely worried about him starting reception in September. I feel that school are not really helping at all and that they just think he is a very quiet boy. He is also on the pathway for ASD assessment.

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@North87 has an EHCNA been requested? If not, make the request yourself using one of the letters IPSEA has on their website.

It’s interesting that a link with ASD is highlighted but not with other conditions.

Recent research suggests over 60 percent of those with SM are autistic.

It doesn't intend to rule out other conditions, iirc it says cooccurence with neurodivergent conditions is common, especially with autism.

My child is a recovered SM, but not as far as I know autistic (I’m not sure terms like neurodivergent are helpful so don’t use them). I’d be interested in the what conditions beyond autism are seen in the SM population and also it would be interesting to know when the ASD was diagnosed (what age and before or after the SM). I would if I was guessing think SM was much more cleanly linked to OCD and that that is obviously more prevalent in the ASD population.

If you have links to the research it would be interesting. Weird that it’s only a suggestion and that they use “neurodivergent” as a population descriptor as it’s so wish washy.

The most common co occuring conditions in children are autism, DLD, and AD(H) D according to a survey on SMiRA's families
I don't know if there's much evidence around OCD - there's a paucity of research in general.

Re your edit: diagnosis of other conditions in SM was significantly impacted by the psychiatric manuals which claimed that SM and other conditions should not both be identified. This is important to understand historically. This has only changed in the last 7 or 8 years really.
Before that we had autistic children whose SM wasn't separately identified and children with SM whose autism wasn't separately identified.

It's a very difficult population to research - ethics clearance is v difficult and obviously it's harder to speak to young people about their experiences when they are unable to communicate in many cases.

Not all children with SM are autistic and it's important to say this as well. For the purposes of this particular article, SMiRA just wants to flag that it's a common cooccurence that should be considered.

It’s odd to focus on one condition particularly and then add the fuzzy neurodivergent population without defining what’s meant by that. I’m amazed that it’s so hard to discover what other conditions are experienced by people with SM. What study is the 60% ASD data based on?

Steffenburg et al (2018)

And our 25k members on our Facebook page, and our years of experience working in the field.

As I have said, there is very limited research on SM.

I feel like I’ve stepped on your toes somehow by asking questions. Expertise and experience and huge numbers of followers on Facebook are impressive. Well done. Thank you for sharing “Shaftesbury et Al” I will go away and have a little Google and see if I can find the answer to my questions. I’ve posted here on MN for more than a couple of decades. It’s usually quite a chatty place.

No, sorry. I was posting briefly while getting a haircut.

As another longstanding mumsnetter though, I do find the Mumsnet use of the word "odd" is often rather loaded!

However, it surely isn't hard to see why research in SM is difficult? The population is by its very nature extremely inhibited. Most modern ethics clearance demands positive assent from subjects (for obvious reasons) and most people with SM are reticent and find the request itself difficult (there is a big overlap with PDA), and are unlikely to volunteer for research participation. Even if they do enthusiastically consent, there is then the barrier of the researcher as a new person likely to be difficult to communicate with. SM tends to be more than just speaking so many with SM can't give written answers either.

SMiRA did an as yet unpublished survey of over 250 of our Facebook families last year and we got around 85 percent of those with SM had either ASC or ADHD, or were on a relevant waiting list and expecting /anticipating such a diagnosis. Our autism figure was actually 63 percent which is almost exactly the same as Steffenburg.

Autism really is the largest intersection we are aware of, of those that have been studied. Most commonly an internalising autism presentation and / or PDA type presentation.

Edited to add: SM is more complex than just anxiety. There's a physical freeze response described by most with SM and that appears to be linked to overwhelm/overload, especially in the autism population. SM can be phobic in nature or akin to phobia but often it's to do with overwhelm as well, which is less directly and straightforwardly anxiety-based.

The two unrelated people I know are not at all as you described. Though both speak fairly easily as adults so perhaps my sample is not the same demographic as those you see. The study I found from the name and date you gave was carried out through an ASD assessment centre so I would have guessed it was loaded but there were many more. It would be interesting to see if it was in fact true. The higher number of autistic females than males was interesting too. I think similar questions have been raised surrounding anorexia nervosa and ASD.