Selective Mutism

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.

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 :) 

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.

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.

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.

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.

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.

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?