Struggling with selective mutism

[ThisExistence]

I’m really struggling. Sometimes I can talk a little bit others not at all. Sometimes I start off manage for a few mins then it’s like my brain starts to shut down bit by bit.
Some days I just can’t speak at all.
Because of the way it presents (not always consistent) I’ve been getting judgemental comments like I’m choosing when to talk to not but it’s not the case at all.

I can’t find anywhere to help me, the gp recommended doing a self referral to ‘talking therapy’ locally but I don’t want that as talking is the issue I thought I needed SALT but they say it’s psychological?

Where do I go for help ?

Try SMiRA they are really knowledgeable people. Sadly we have had no help with my daughter as she was referred to CAMHS but it was only a talking therapy.

My teenage DD has selective mutism. From what I understand, SALT only really get involved with very young children. It's rubbish for older children and adults.

It is a form of anxiety so therapy might help but it relies on finding a therapist that you would be able to build up a relationship with so that you could communicate, ideally one who has some experience and understanding of SM.

The SMIRA website is quite helpful https://www.selectivemutism.org.uk/

I actually prefer the days I can’t talk at all as the days where I can a bit are just awful as I’ll start and then it’s like my brain starts dropping out words I can’t remember them or i can but what connects thoughts and intended speech to my actual voice breaks down and I can think it but not say it or I can think it and only say some of it so the gaps make it not understandable

I’ve had to start carrying a note got I’m going to get coffee I worry it’ll happen so I write a quick note to say ‘I have a speech problem please can I order this ……’ but I hate it I just hate having to deal with this

Not sure talking therapy is the best option.
It's a form of anxiety disorder so a psychologist specialising in anxiety or a SALT with special interest in selective mutism would be better.
Either would be able to teach you some strategies to help

Have you tried antidepressants? As they're good for anxiety they might really help you and are generally suggested for SM. Worth trying if you haven't already.

Unfortunately yes and never had a good experience. I was on them aged 13-18 (I was actually autistic and undiagnosed) they didn’t help at all , I was diagnosed at 19 and then put on a different AD and then 2 years later switched again (citalopram then sertraline) and none of them helped at all. To add I had Prozac aged 13-18

I remember at age 12-13 having to go to so many appointments when school raised concerns that I wasn’t talking , participating, was daydreaming (disassociating) and generally presenting in a way that was causing concern then I school refused. Everyone decided I had severe depression yet I said ‘I’m not unhappy’ I remember as it was clear and I managed to say it as I wasn’t unhappy and then obviously AD had no effect , Even when coming off I just stopped didn’t need weaning off they just had no effect positive or negative on me may as well have been sugar pills !

I had some training when working with a child with selective mutism, the SALT explained it's a phobia of talking, often triggered by figures of authority, so the child would happily talk to friends (albeit quietly), and would sometimes talk to TAs in school but not teachers. Having to talk induces a panic response. I'm afraid the advice we had was all relating to how to support the child (not forcing them to talk, not making a big deal of it when they do, engaging in mindfulness activities, differentiating work/expectations or putting in supports so they didn't have to speak etc) rather than how they would support themselves though, sorry I haven't got any advice to help, it sounds very frustrating for you.

This is my daughter who is nearly 18.

In January she was diagnosed adhd on top of her ASd. Honestly the medication for ADHD has transformed her. She had no success with anti depressants previously. She told me the other day to stop coming to medical appointments with her as she wanted tospeak for herself😮. This is the child who would never speak to anyone authority! They’ve removed her anxiety!

She has ‘the sliding in’ technique on her EHCP which is speech therapy not anxiety related therapy.

HTH. ASD and ADHD are often comorbid. We thought she was ASD but just a chance remark triggered the ADHD diagnosis which we never suspected.

Sign language can be helpful in this situation.

Sometimes I do wonder about adhd. I find my mind darting back and forth over things frequently but I’m not productive or organised if that makes sense ? I rely on alarms and lists and I just feel as if my mind races and as if it’s constantly being twisted in 2 different directions one part wants to keep routines the other part is manic ? It’s exhausting I can often sleep for days if I’ve had a mentally draining day. Maybe I need to look into this more as if there’s some kind of medication that could help I think it would be life changing

You sound adhd tbh. Fast mind and not productive.

My Dd always complained about a racing mind. I just happened to mention it to the pysch who prescribed her the (failed) fluoxetine.

She did an assessment, Dd triated up to the full dose on about 3 months and it was like a flipped switch and total personality transplant. The pysch said her anxiety would improve and we didn’t believe her. But it did!

Routines and manic describe AUDHD perfectly. Anti depressants did nothing for her.

🤞🏻that you can forge ahead. I hope this brings a result for you.

The exhaustion is ND burnout. Conserve your energy where you can x

Messsge me if you need more help

The exhaustion is also part of ADHD. Dd said her brain fog cleared on it.

I have suffered for many years with this and it started when I was very young about the age of 2 and half did not speak at all. It has happened when people say nasty things to me just clam up, say nothing but in my head I am streaming at them. Never defend myself either.