selective mutism? Anxiety? Aibu to see the doctors?

[Anonymou574]

I have been getting more and more concerned about my dd this past year particularly. She is 10yo and has always been a quiet shy child. There is times when she will freeze when being spoken to whether at home or at school. Can be something as simple as asking what she wants to eat? Or if being asked a question at school or when asked if she has brushed her teeth etc She will literally go silent and sometimes cry or have tears falling from her eyes.

I've tried talking to her the school have tried talking to her she does various types of things at school but nothing is helping. She has been this way since she was 2yo (literally documented from nursery) so I know for a fact it isn't hormones I just presumed she would grow out of it but it's getting worse. She starts high school next year and I'm so terrified. My friend keeps saying o she would grow out of it stop trying to label her it will make the situation worse but I now feel like a terrible parent because I haven't got it checked sooner.

For context I have three dd she is the eldest and has 7yo twins.

I’m going to get a private diagnosis for autism sorted I do have adhd too x

Don’t feel horrible. Im a teacher and I’ve still taken time to get to grips with things with my own children!
You sound like a lovely Mum 😊

Please be as kind to yourself as you possibly can. I don’t know anyone who doesn’t wish they’d done something earlier in these types of situations. You don’t know what you don’t know. You’ve taken action as soon as you realised it might be helpful and that’s all we can do. Having loving parents who truly care is a gift your children have that will help them immensely whatever other external help you now access that may also be helpful.

DS15 has SM. Like you I initially just thought it was shyness but he didn’t speak to teachers in school at all and only to other children or TA if no one else was in earshot. But the lack of action from your school really surprises me. By Y3 ours had discussed with SALT (who in our area don’t deal with it) and CAMHS (who theoretically do but he’d never make it to top of waiting list) and got an Educational Psychologist in to assess him. They worked with us and school to put in place a programme based on the Maggie Johnson manual - it’s an expensive book but brilliantly helpful. Basic premise though is taking really small steps from what they are comfortable doing and gradually widening it out. It worked really well and meant by end of Y6 he even said a line in their leavers show.

I was really worried about secondary school but he has done so much better than I expected. He will never start a conversation at school but will answer when spoken to. He continues to be anxious about anything new though.

So no YANBU to go to GP but also talk to the SENCO as you may find that more helpful. One thing to be aware of though - if it becomes clear that it is SM then push to get a written diagnosis from a consultant, even though it may seem pointless to put your DD in an anxiety-inducing situation to get it. Despite all the Ed Psych paperwork, DS cannot get a dispensation from doing his GCSE language oral without a consultant diagnosis, which has caused him huge stress and will bring down his otherwise likely to be fantastic grade.

Finally, the best support you can offer is to make sure your DD knows you won’t pressure her into situations she can’t cope with whilst taking baby steps to very slowly increase the situations she will speak in.

I was a selective mute at primary and some of secondary school.
Looking back there were severe adverse childhood experiences which caused it but it was never picked up on by anyone. Secondary school was an absolute nightmare and i'd focus all my energy on getting your child help before then.As an adult I'm actually very assertive, involved in trade union duties etc but I always reflect on how the selective mutism basically "hobbled" me in terms of getting involved in any activities. I was also from a very large noisy family and quietness was seen as a virtue.

You haven’t failed by not doing something sooner. Lots of things only become more obvious as children get older and sometimes you need to wait and see if children grow out of it.

I’ve always thought DS was just a bit highly strung and that he would grow out of some of his behaviours (like hand flapping and rocking to sleep) and it’s only as he’s got older (now 10) that he hasn’t grown out of them and other traits have become apparent that I’ve realised he is almost certainly ASD. I do share that feeling of thinking you’ve failed though. I didn’t realise ds struggles with some of the things he does until he talked about it to the assessor but when I feel bad I try and remember that often as professionals we watch and wait and that we’re getting things sorted now.

My dd won’t speak to certain people. It’s got better as she’s got older. She’s ASD.

Do mention (if they don't already know) that you have another child on the pathway for ASD etc. In Sweden I think they automatically screen siblings if one child is diagnosed as it is so common (and very heritable it seems).

I would be pushing very hard to make as much progress as you can with diagnosis before secondary as things can really fall apart at this point without the right support. If you can afford private then I would go down this route at 10 years old.

My daughter has ASD, she's younger than yours but also displays selective mutism. The diagnosis wasn't to label her but to help her to understand herself more, it's helped a huge amount, her confidence has grown, our understanding of her needs has grown and she's generally so much happier now that she understands why she felt so different. My daughter isn't usually mute at school (although she can be very quiet there) but often at home after a busy week/ day or before something causing her anxiety. We ask closed questions when she's like this, starting with "do you feel like talking today?" Then we manage it asking what needs to be asked "would you like to be alone or would you like me to stay quietly with you?" And so on based upon her responses. DD also sometimes seems to sort of choke on her words a bit like you've described like she wants to speak but the words just can't come out.

My daughter also uses screens more than her sibs, she uses them to decompress. DD also spends time before transition periods at school (so end of the day, before lunch) in the sensory room or on the laptop to help her to regulate.

We've also had a block of support from SALT, they've done initial assessments and are working on some targets (mainly around how she regulates at home to try and help as the nighttime meltdowns are so exhausting).

I hope you manage to get the support you and your daughter need ❤️

Hi; my son has selective mutism. I was unaware too. Thought he was just shy. It was picked up when he started school at 4 and he has had years of therapy. You are definitely right to speak to the gp. Speak to the school too. It is best to deal with it as early as possible. My son is still quiet but there has been a huge improvement years on. One of the things the therapist told me is do not push them to speak. It makes their anxiety worse. I would do this when someone would talk to my child. That's the worst thing to do. If they don't answer just explain they are quiet and move on. The therapy will set out tasks as they get more confident such as going in a shop and speaking to the shop keeper etc. You are doing the right thing.

As someone who experiences situational mutism going against your daughters wishes will make the situation worse. I experience it when I feel under threat and suffer overwhelming anxiety.

You need to help her to learn how to manage her anxieties and improve her self-esteem, demonstrating that you do not respect her will only maker her worse.

She is highly likely to be autistic. For our daughter we’ve avoided the medical route (unlike many of her cousins) and instead of having her diagnosed we simply talk about any challenges she has in the same way we would if she was neurotypical and needed support navigating peer relationships, managing her MH. Our daughter is doing a lot better than her cousins as she isn’t made to feel that there is something wrong with her

@Polygonpresent - "Your friend, frankly, is an idiot, even if well intentioned."

Yes, completely. The "it's just a label" crowd are perhaps the most damaging, dismissive, invalidating people around whether they intend it that way or not.

Not to say that this is autism, but it's possibly a similar path in terms of neurodiversity whatever it turns out to be, and...the diagnosis of the root cause likely won't only address the selective mutism but also identify other strategies for building a support system and an environment around her which helps in every aspect of her life, especially as she passes into adulthood.

Identifying an actual reason could be hugely important for her, because the alternative is feeling defective for the rest of her life. The "just a label" or "just an excuse" folk usually can't see the difference between those things and a reason.

For our daughter we’ve avoided the medical route (unlike many of her cousins) and instead of having her diagnosed we simply talk about any challenges she has in the same way we would if she was neurotypical and needed support navigating peer relationships, managing her MH. Our daughter is doing a lot better than her cousins as she isn’t made to feel that there is something wrong with her

h3ll0o my child, diagnosed, is doing much, much better than their cousins who are not formally diagnosed. This is because they understand their challenges and so do the people, teachers etc. around them. They also have an EHCP which means they are reaching their potential. There is nothing wrong with my child. They are neurodiverse.

For our daughter we’ve avoided the medical route (unlike many of her cousins) and instead of having her diagnosed we simply talk about any challenges she has in the same way we would if she was neurotypical and needed support navigating peer relationships, managing her MH. Our daughter is doing a lot better than her cousins as she isn’t made to feel that there is something wrong with her

She would benefit from a proper assessment. You are doing her a disservice. A proper written report should help her access more support. She has a disability there’s nothing ‘wrong’ with her. Sounds like you are trying to sweep it under the carpet.

@ArseInTheCoOpWindow she doesnt need any medical support so she wouldn’t benefit from a ‘proper assessment’. I’m also conscious that when I was medically diagnosed there was no additional support and there still isn’t for children unless they need SALT support and she doesn’t, she’s a happy, well rounded individual.

Im also conscious the same manual used to diagnose autism as a disability was used into the 1970s to diagnose homosexuality as a mental impairment. I don’t believe being attracted to the same sex means someone has a mental impairment nor do I believe being autistic automatically means someone is disabled.

I am disabled (I have ADHD). In our house being disabled means you’re unable to do something hence why we don’t believe that having the autistic neurotype automatically means you’re disabled. For example, my husband is autistic and manages a team of 30 staff, I’m autistic and am a teacher. Our needs m make us a minority but we’re not unable

The fact that the DSM-2 was reflective of poor attitudes in the 1970s isn't really a reflection on the DSM-5 - the references to homosexuality as a disorder were removed 35-40 years ago.