Selective Mutism

The first few years of school I had a noise I made for yes and a noise for no but otherwise didn't speak. I could read so teachers mostly just put me in a corner with a book, which I was fine with. I vaguely remember having speech therapy but I'm not sure if it was helpful. As I got older I was quiet but not silent. Now I talk but sometimes I wonder what the point is in group settings as even if I think I've found a gap in conversation someone else will just start talking over me. Some things that help me know if it's my turn to speak are if someone asks me a direct question. I also generally don't bother trying to talk if it's a noisy environment as I know the other person won't hear me and will stick their ear in my face which is awkward.

Just doubling back to thank you for posting these videos.  They're very useful and, although I've noticed this topic before, I'm only zooming in on it now and fully realising how relevant it is to my and my family's own experiences.   

It’s makes such a difference when you finally find people you can relate to- a real sense of belonging. I initially thought I found it difficult to make friends but once I started interacting with other autistic people, it was so much easier.

Yes - I totally agree. I only wish I’d realised this years ago. I previously thought that I’d find all people stressful to be around and hard to understand. Now I realise I just needed to find people who I could genuinely relate to. 

You are very welcome. I feel the same way when talking to autistics - the connection is immediate and you don’t have to explain anything. It is so useful to learn directly from our community, we are the experts on our experiences. I love the way you explain it, like speaking the same language.

It definitely does make sense. Thank you for your interesting and thoughtful reply. I’ve realised that there are so many complex reasons behind ‘not speaking’ - and that it’s definitely something that autistic people are far more likely to do - either as a coping mechanism, because of extreme anxiety, to withdraw from communication for any number of reasons. It’s good to know that other autistic people understand and that we’re not alone.

I go quiet for the following reasons:

• I am overloaded within that setting or the people.  Speaking would just add to the noise or I need to process incommoding information from everything.
  • Some people radiate noise in the form of none verbal communication. For example, clothes, make-up, haircut, body language.
• If i feel i am being patronised.
• If i feel underestimated.
• If i feel not listened to.

These are the most common reasons for me. Does any of this make sense?

That’s really interesting to know - thank you so much for this. It’s so kind of you and I really appreciate it! 
One thing I’m sure of is that only other autistic really understand. I’ve learnt that from coming on here - it’s as if suddenly I’m speaking the same language as other people. It’s been so good to find that - a real revelation. 

Also one other thought are these videos useful;

https://youtu.be/DJ44rHvSdMg

https://youtu.be/khoFGJG4xsg

In these videos autistic people share their experiences and strategies for managing SM.

You are very welcome. There is no pressure at all for your son to join this forum, it is a very accepting space. In terms of online social opportunities there is platform called Aucademy which run autistic led Facebook groups based around dedicated interests:

https://m.facebook.com/groups/1679015432256907/discussion/preview

Hopefully this might be of interest to your son. 

Also NAS run online branches based around specific interests:

https://www.autism.org.uk/what-we-do/branches/online

There is a also a site called Spectrum Gaming:

https://www.spectrumgaming.net/

I hope this helps.

I thought of more to say on this, which might help.

At primary school around 8/9 I remember being took out of class for a while and had some kind of assessment but obviously can't remember any details.  I probably didn't say much, and doubt I could have explained how I was inside, so they only knew for sure that I needed glasses as I must have struggled in the eye test (I remember bits of that).  I didn't have the awareness of anything wrong or difficulties, not sure many kids that age do really but even if I had I just wouldn't have told anyone unless asked.

I gradually became more aware and talked a bit more through school, but only really improved when at college and then work.   Talking about work things became fairly comfortable, but I didn't do the social stuff and that made it really difficult.  Its very much like shutters coming down, you can be fine talking about a work thing with a colleague but if they ask what you are doing for the weekend, or whatever, and bang! you either clam up or say very little and the conversation stops, really awkward.  Pub lunches, xmas meals, all kind of work socials that you are not really involved in just happening around you, you tend to avoid them because its painful, but I went now and then to try and fit in but didn't really work.

Still that way now, but learnt things fairly recently that might help.  I bought a book a few years ago that explained how to work on social anxiety, but only recently been in a better place to try it out.  Its key that when around people you focus on them as much as you can, and not any thoughts or feelings you have, mindfulness really - that minimises anxiety and you can think more clearly about what they are saying or what you need to say, so more likely to engage with people and be better at communicating.

www.amazon.co.uk/.../ref=sr_1_4

Its really hard with the lack of resources and understanding, harsh realities.  You may want to reach out online to other parents with sons/daughters affected by selective mutism, see what they suggest or have tried.  There might be support groups out there, or meet up with other families so not so isolated.

Thank you. He’s 20. I’m trying encourage him to come on here - but he’s a bit reluctant so far. He might though - it’s hard to tell. I’ve been looking for social things online for autistic people that he might be willing to try - but I haven’t had much luck. Any ideas would be greatly appreciated if you know of anything. Thanks for your very kind offer - I’ll pass that on to him. 

Yes - my son has all those sorts of social anxiety concerns - which do connect to Selective Mutism. Throughout all the years he has struggled with this it’s been so hard to get help and support for him for his Selective Mutism. The NHS wouldn’t help, Camhs didn’t help, Ed Psychs didn’t help, SALT said they didn’t help with it. We had to fight to get specialist help but by then it was a very ingrained habit and in the short time he had access to specialist support they couldn’t help him. To be honest just writing this and remembering how little support there has been over the years is upsetting. He deserved so much better. It’s had a massive impact on his life. Sorry - I’m being very negative and I don’t mean to be. But it’s been pretty heartbreaking to watch my son struggle with this. He’s the most wonderful person and yet has no friends. I want him to have the life he wants to have. 
Thank you for your reply - it really does help to talk to people who understand. When he was a school (he’s enrolled in college at the moment but not attending due to his mental health being not good) no one else seemed to understand at all - we felt like complete outsiders from normal school life. No one seemed to understand - it was very isolating. 

You are very welcome. I am glad I can help you and your son. Thank you, it is really helpful to find like minded (particularly autistic) people to share similar experiences.

How old is your son? Would he like to use this forum? I would be happy to chat with him if feels comfortable.

Thank you for sharing this. It’s very inspiring that you are managing to speak in public now to so many people - that’s a huge achievement for someone who once experienced Selective Mutism. I’ve read this to my son and it’s so helpful for him to hear of people moving on from their Selective Mutism. It’s hard to maintain optimism when you’ve struggled for so many years with it. Thanks

I may have had selective mutism through school, as I was better with family at home but at school could be mute most of the time.  It never got picked up so wasn't diagnosed with anything.  Can't say if it really was selective mutism or down to social anxiety or both or something else.  Lost in your own world could be at play, but sometimes there is a want/need to speak and you just can't and that is difficult.  It can stay with you through life unless helped, as can social anxiety.

Not sure what's available for selective mutism through the NHS - for adults is a case of finding a private therapist that can help with that, and be able to afford it.

Social Anxiety is very similar from the outside, but its down to worries about saying the wrong thing, or what people might think, or when to speak.  You have to learn to manage/change the thoughts/beliefs you have, so you free yourself to speak even if you mess up or others judge.

I had selective mutism at Infant school. The shock of starting school resulted in a 3 month period of total mutism at school. At home I continued to be talkative. I had shorter episodes after that, usually when I was stressed by being asked to read out loud. I often became mute when asked questions by adults that I did not know, up to around 9 or 10. In adult life I have spoken in conferences and at my place of work to as many as 250 people. I cannot say I ever enjoyed it, however.

Thank you - that’s really good to know - I read your message to him and he asked me to thank you on his behalf. We’re both really happy for you that you managed to move on from it - and it’s encouraging for everyone who struggles with this to hear about stories like yours. Best wishes to you :) 

Hello, I used to have SM. I hope your son knows he is not alone, Selective Mutism is a common experience for many autistic people. SM affected me from year 8 to year 12- it was my aim to overcome it in sixth form. I managed to do this after I was off school because of major surgery. I think my SM was autistic shutdown instead, I know it may not feel achievable for your son right now but it is possible to overcome SM.

 I hope this helps.