Selective Mutism

You are very welcome.

Many thanks.  I'll have a good browse.  It may be that I've visited these sites already as I keep circling around in desperation.  But it really helps me to sort the wheat from the chaff when others recommend sites.  

I must have misunderstood. Another autistic literal interpretation. 

You say you are looking for similar organisations, have you heard of Autistic UK?

https://www.autisticuk.org/

This organisation now offers peer support groups on Zoom every two weeks which sound really interesting.

There is also another organisation based around autistic self advocacy:

https://ndsa.uk/content/

Just one more…..

https://www.autangel.org.uk/about/

This is another autistic led organisation it is based in Reading but many of the talks are delivered online, so regardless of location anyone can access them.

 I hope this helps you in your search for similar organisations.

Might be a bit late to this but only found out last year that this is what I'd been doing my whole life. But only when I was extremely overwhelmed or tired or felt like I didn't have the energy to talk. I always preferred text over speaking because of it too (amongst other reasons) I was also always considered shy growing up and told to participate more in class. I grew up whispering my answers to my friends at the time (and would be correct most of the time..) 

Its always been a difficult aspect for me as I just shutdown and can't communicate whats happening to me as I either can't get the word out or no one understands so there was no point in trying.

I was communicating using single words or short sentences ( Nie wiem = I don't know), most of the time, sometimes it wasn't not being able because of stress but no need to do so. At home with my sisters I was talking normally. 

Until I was 16 and my math teacher found a walkaround to help me pass GCSE equivalent in polish, I joined school theatre lead by one of polish teachers, she was friend of my math teacher, and they made a deal, if I join theatre and do those roles nobody wanted, she will note during exam to let me pass, this way I had 2 out od 3 teachers sitting during exam on my side. 

So I joined theatre, and artists turned out to be nice and reasonable people, they helped me learn how to articulate more difficult words, (words like like that were often making me unable to speak), and they convinced me to start rehearsing things in my head, this way when it's time to say them I'll be ready. Until then I was thinking only my way, in pictures, not in words. 

Ah, I meant they just sat down with us and talked, rather than doing a presentation.  But, yes, I was quite impressed by them and am onthe lookout for similar organisations. 

Thanks for the information. AMASE sounds really interesting, I would definitely consider joining this organisation if I lived in Edinburgh.

Would you recommend the talk delivered by AMASE? I imagine it would be good/insightful because the founder Fergus Murray has collated some brilliant work on autistic experience- monotropism.

Yes, i think it might have been a couple of representatives from AMASE who came to talk to us.  One of our local group members here in Durham has family in Edinburgh and they've really benefitted from the Number 6 one stop shop, a Scottish initiative.  They have a FB group if anyone here might be interested. 

You are very welcome.

 I don’t know much about the support offered in Scotland, all I do know is that Fergus Murray (autistic son of autistic researcher Dinah Murray) set up a support group called AMASE.

https://amase.org.uk/


Thanks for the recommendation. 

Many thanks.  I'll have a look.  I've been really impressed by some of the support available in Scotland, particularly Edinburgh and a couple of people came to visit one of our local carers sessions before lockdown (which now seems a very long time ago).  I think the problem is that I'm seeking support, advice and guidance on family matters, intergenerational trauma, and parenting adults, all through a neurodiversity lens, and this is proving hard to find. 

The Inside of Autism course is well worth it though - I wish I'd had access to something like this years ago.  And I don't often say this, but in this case I can't recommend it highly enough.  :)

I might have a look at the Inside of Autism course, like you say I think much if not all of Kieran’s work is aimed at children and young people because he has young children himself.

Also I think he focuses on this age group because his other specialism is autistic masking and the mask usually develops as a child and becomes more ingrained as a teenager.

I am sorry you are struggling to find support for your family would this website help:

https://autisticmentalhealth.uk/about/

I love Aucademy too, it is great. I love the fact that we can learn so much from our own community.

You are very welcome. I am really looking forward to starting Kieran’s courses.

Yes, the Inside of autism course is just excellent and I might re-do it because it's a while since I attended this and, of course, the Q&A section will be different, even if the course hasn't been updated.  

I did the one on shutdown and burnout but found I needed more - in particular addressing chronic burnout in adults and the workplace rather than in education.  And I think, perhaps because of his background and having young children, the focus is on school age/younger autistic people.  Likewise Jodie Smitten's courses.  

They were still useful and some of it is still applicable,  but within our family, our youngest age of diagnosis is 26.  Plus, within my extended family, I can see (or I think I can see) examples of severe burnout in much older people. 

I also had the experience of growing up with a parent in severe and chronic burnout for most of my teenage years and some insight into families, intergenerational trauma plus shutdown and burnout would be helpful for many.  

I just wish I could find something but, although I can find lots of videos about individual experiences, I can't find anything about supporting older adults within the family.  Well, apart from the obvious things like a calm, low demand, low arousal environment and person-centred family support.  Maybe that's all there is.  ️

Add another- Kieran Rose has some really interesting and relevant training courses that you might be interested in:

 https://theautisticadvocate.com/onlinelearning/
 
The course on shutdown and burnout in education may particularly interest you.

Yes, I LOVE Aucademy but hadn't specifically looked at mutism until the past couple of days, so the links were really helpful in prompting me. 

I also really appreciate all the work that Kieran is doing.  His courses are just excellent so I generally look out for anything he's involved in.  Must have missed this one though.  

Just another thought, would it be easier if I posted these videos separately so everyone can access them?

Your are very welcome. I am glad I can help you and your family. Aucademy videos are brilliant in general, but I think the SM ones are really interesting. Kieran Rose’s experiences of SM are really insightful.

Also, I have tried to research SM before but obviously it is much more useful and relevant to hear autistic people talk about their SM because it is very different.

Jenny Butterfly said:

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 good that these resources are so helpful for you.

Yes, I sometimes appear to go quiet a while and look disengaged when really I'm not. I know this because sometimes people prompt me for responses when I'm not quite ready.  I'm not disengaged, I'm just processing the incoming information and there's a bit too much of it, so silence until I have dealt with that and then decide whether and how to respond.  

I lose verbal communication in shutdown. There's not much you can do about that until the person emerges from it.

Also, when they took some of my teeth I couldn't talk for a couple of weeks - it was the sensory shock, not shut down then.  I had to really force myself to speak again.  I think only my will to go back to my Italian class pushed me through that.  It was horrible.  I guess, I'm saying, although it can be shut down, it can also be context/sensory dependent. 

If you can get to the bottom of why he isn't speaking, you might be able to alleviate the factors which are causing it.  Clearly, something about school - the social? The environment?  Is he always silent in school or only sometimes?  Is something sending him into shutdown? Or is it about the context?

I'm now watching the Aucademy video with Harry, Kieran and Senka (mentioned above) and it's really coming home to me how much I've been affected by this, while all the time not being able to fully articulate my experiences.  Watching others speak about it makes it much easier for me.  And I can quite clearly remember this affecting me from my earliest days, at school, in the playground, in social groups, then later at university and work. 

Things that have helped me over the years:-

- Not CBT with a therapist (which would have me almost adopting the mask of a client and saying what I felt I was supposed to say because actually this felt like yet another social experience in which I was expected to perform) but reading around the subject and using a bit of very personalised cognitive therapy on myself.  This involved journalling, catching my own automatic thoughts  then drilling down into any problematic or "sticky" core beliefs, especially around ideas about self worth, others' expectations and conditions of worth which I might have internalised over the years.

- In similar vein, not taking on anyone else's idea of the kind of exposure therapy that might somehow be good for me, but, at my own pace and bearing in mind my own levels of discomfort (often extreme such that it tipped from discomfort into distress!), selecting personal challenges with which, on a good day and with the wind behind me, I felt I could cope.

- Developing a more compassionate, caring relationship with myself, moving further and further away from any conditions of worth that had been pushed onto me (often by figures of authority).  It's OK if I don't speak.  Do I need to add a sense of shame about not doing so into the mix?  And perhaps there are alternatives?  Does all communication have to be verbal?   Might I pre-record that presentation?  Does everyone need to contribute inthe same (NT) way?

- Doing a kind of "Paul McKenna" on myself.  Imagine the most confident version of myself.  Ask myself how I feel, what I do as that more confident version.  Mentally step into that self and notice the shift, what changes, whether I can safely move into different environments in that state.

- Sometimes, and against all NT advice, avoiding things might actually be better for me and certainly less damaging.  Sometimes I need to be amongst my own people and in my own natural habitat.  So what if that's someone else's idea of a hermitage.  

- Masking.   Mixed feelings about this but I still do it.  I just think there's a need to be tuned into what's going on and notice when I'm doing it, why, and when it's actually safe not to.  Sometimes, though, it just isn't safe, so then I don't merely step into a more confident version of myself, I step into my idea of a more confident, "successful" person, depending upong hte environment I'm in.