When a lanyard isn't enough (autism)

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Can anyone give me some tips on how to prevent people talking to my DC when we are out?

We are slowly building on shaky foundations at the moment. DC is 13, hasn't been to school in over a year, selective mute has only spoken to immediate family for a long time and absolutely terrified of someone talking to them.

I do what I can to try and intervene but sometimes I'm just not fast enough. Yesterday in a cafe the person who had made the drinks was passing our table later and asked DC if their frappe was ok. I quickly said yes thanks it was lovey but DC took the sunflower lanyard off and is now refusing to wear it because it 'does nothing for me' - I have tried reasoning and explaining that they don't know your specific needs etc but tbh I'm at loss as to how I can prevent these interactions for now. The lanyard has always been a choice I haven't forced it but I do feel when I am interrupting or asking people not to approach us in certain venues it helps if the lanyard is visible

Mostly I'm just looking for the best strategies really, I can normally work things out fairly well but this has me absolutely stumped. We are trying to rebuild from a complete breakdown and I don't want DC to regress further if I can't find an effective way to help.

I have ordered a custom card for the lanyard saying please don't talk to me, I am autistic, - (again it will be optional but I'm trying to cover all bases) but realistically few people would take note of that in a normal exchange of pleasantries situation

Any suggestions would be very welcome

I agree with the pp that it might not be possible to avoid others talking to your Ds completely. You are probably already doing this so sorry if not helpful, but I would focus on helping DS to (a) understand his fears and challenge them gently where possible and (b) develop very specific actions he can take / strategies for when it happens. Help him to rehearse them at home so he feels ready and safe with his response when it happens?

You need to tell your DS that people are going to talk to him and he needs to find ways to deal with that.

I would be very offended if someone had a lanyard on and people ignored them, simply because they were autistic.

I work with autistic students and me and my DD both have autism.
I would never ignore an autistic child and I would talk to them just like I would any other child.

I do not expect an answer but I will still talk to them and I think you answering for your son is fine but you should not be discouraging people from talking to him.

I do think ear defenders are way better then the lanyards at getting people to realise they’re autistic/need space.
The lanyards are often unintentionally ignored now as during covid everyone was buying them.

Changed name for this post. Been around for years.

OP I work with the national selective mutism charity SMiRA. Have you found our website and very busy Facebook page? If not I recommend joining for informed advice.

In a nutshell, in the long term you don't want to be speaking for him or enabling him to avoid or expect to avoid anyone speaking to him. I get the value of having it as a temporary understanding with him but it will maintain the SM in the long term.

I have a lad with autism and SM myself who also crashed so I get it.

The official advice on whether you speak for your young person is no, but you can tag question them in in a way that removes pressure on them without simultaneously relieving them completely by answering "for them". I would do this in your example like this:

"Is your smoothie ok?" To your ds
Wait one second to give son option to nod
You then say
"They are great, thanks, aren't they?" Use eye contact to son at tag question point. Then move on with the person, change the subject.
"Have you worked here long?"

This gives your son an opportunity to reply at two points, but you cover the expectation for him. He also doesn't get the anxiety build up plus release when you answer for him, as from his pov you have sort of left him hanging, but very very gently. This will enable him to see that he can and does survive someone coming over.

You can assure him that you won't allow him to be exposed into a full expectation to speak, but that you cannot promise no one will talk to him. You can promise that he won't die from it though, and that everytime he survives it, it gets a little easier. Think of it as like he's at the foot of a mountain and at the top is being fine no matter whoever speaks to him. Before, he was 20 miles away from the foot of the mountain but by starting to go outside again more he has got to the foot of that mountain, when a year ago he thought, probably, that he couldn't. Now he needs to take steps up the mountain. Each step is a tiny distance towards the peak, but if he never takes those tiny steps - if he never wants anyone to speak to him at all - he will always be stuck at the bottom of the mountain and not inching up the side. You'll be there as his guide, but you can't climb the mountain for him.

@SayHi

You need to tell your DS that people are going to talk to him and he needs to find ways to deal with that.

That's not really how it works tbh and I feel like you are minimising quite a serious situation. It's great that some autistic people can just find ways to deal with things but at the moment it's traumatic so im trying to avoid it. He is 13 and has years to find ways to deal with it. Im just trying to find ways to make things a bit easier meantime.

I would be very offended if someone had a lanyard on and people ignored them, simply because they were autistic.

I'm not expecting the lanyard to do that, I am asking for other ideas.

I appreciate your help but the scenario you mention giving time to nod just isn't realistic at this time. This isn't about him being SM, a lot of people seem to be making suggestions as to how I can work on him communicating with others. But for now I'm just trying to get though a trip outside without panic attacks and leaving the venue which happen if people talk to him. He finds it almost traumatic atm and im sorry if this comes across as rude because I don't mean it to but Im not looking to work on him answering people. Not yet.

i think a PP's suggestion of having the actual lanyard printed with custom capital letters of your choosing, might be more effective as the cards can be hard to read or not directly in people's eyelines.

Nothing like a bright coloured lanyard strap saying, 'LEAVE ME ALONE' to help matters!

You can also add large custom badges to lanyard straps nearer the top if he would be happy to wear those at all?

I have a badge that says 'do not touch me' on mine and it's very effective!
Good luck OP!

Respectfully, I wasn't advising on how to get him answering people. I was advising you on how to answer for him in a way that doesn't perpetuate the avoidance in its current profound state.

We never work on eliciting speech.

We always work on reducing anxiety.

The only way to reduce irrational anxiety is by tiny steps of exposure.
If his ability to tolerate being outside is predicated only on his absolute need for no one to approach him, then he isn't really ready to be outside in those spaces. Because if that genuinely is his red line then he will be retraumatising himself daily. It's an unrealistic condition he has set.

I would really advise, as I said before, seeking advice on the SMiRA Facebook page.

I get you, OP. I was that child once (still am in many ways). People always thought they were helping by trying to get me to talk, nod or interact with them in some little way, as a way to build confidence or something(?), when really I just needed time to get used to being out in public again without the worry of having to deal with people.

So I personally think you are doing the right thing. I actually think it's ok for the occasional person to try to talk to him then for you cut them off because it means your boy will know you've got his back. He just wants to feel safe. Talking can come later.

It happened rarely over the months or so we have been working on going outside again. I'm sorry you think I'm doing it wrong but I can assure you I will always do right by him and I'm not going to stay at home in the off chance someone may talk to him when he has made massive progress. I was just looking for some casual tips to help ME

Thank you. So much.

Speaking to autistic people is inclusivity.

LOL, there original me comes in again, with the most awesome countercultural - actually most normal comment between them all

I don't really know what you mean there

It's very hard to control other people's behaviour especially when they are unaware of your requirements.

I think your best bet is engaging with the manager and staff at your regular cafe. See if they can set you up with a regular table and other visual cues to help staff remember not to speak to your boy. Maybe this can then become a safe space for him.

This maybe sounds counter intuitive based on previous posts - but have you discussed strategies for him to convey his ‘anti-socialness’.

I’m thinking along the lines that we normally encourage people with autism to make eye contact, to smile, to ask follow up questions and generally scaffold to socialise with the public - particularly NT people.

As autism is, at its core, a communication disability (apologies I know not everyone thinks it’s a disability), have you checked that he has strategies to avoid strangers trying to talk to him.

it sounds unlikely given your previous posts, but if, for example, he was making an effort to make eye contact with people because ‘that’s what you do’ - he will actually be encouraging people to talk to him.

At risk of you looking like a terrible person (lighthearted!) is it worth ‘reminding’ him, ‘don’t make eye contact’, ‘don’t smile at people’, ‘don’t sit up straight and look like you want to engage with people’. I realise how stupid this sounds as I can’t imagine he is exactly inviting everyone over with a cheeky wink and then ignoring them!

I fear that by me telling you to tell him not to make eye contact, I’m both teaching you to suck eggs and encouraging him to avoid social interaction which is perhaps the opposite of what you want.

Perhaps in the short term, if he is at risk of not leaving the house, then this is the lesser of two evils?

thank you, you are actually bang in and for the most part I do say you don't have to do these things. I was beginning to question myself for a minute but I do think reinforcing he doesn't have to make eye contact, talk to anyone etc it the way forward.

Went away and thought of a better way to word what I was saying and have come back to see you haven’t totally rejected what I said, which is good!

For reference, I was a selective mute at a much younger age and suspect that I am likely ND in some way. I also have a 4 year who I suspect is ND.

In my own child there is a big demand avoidance thing when I try to help her do something she has decided that she can’t do. If I try to even encourage her positively in the moment, I’m still talking about THE THING that she doesn’t want to do anymore. So once she’s decided that she CAN’T count to 20, there is no use in pushing it. Chances are if I don’t bring it up, the next day she’ll do it on her own.

I also distinctly remember deciding to talk in front of people as a child (after a load of therapy etc) and given that SM is often a control thing, it had to be in my control to start talking. There worst thing would have been feeling like I’d been tricked into talking.

All that to say, I wonder if it would be worth ‘comfort bombing’ him, so like love bombing, but finding the most comfortable ways that he can interact with the outside world and pointing those things out for him.

’Lets go out now when it’s quiet’
‘Oh let’s go back to the cafe with the surly owner who doesn’t talk to anyone’
‘that table over there looks quiet, oh and one of the chairs is facing the wall’
‘have you got your phone before we leave so you can look at that whilst I go and order’

Sort of pointing out all the ways that he can control the situation to prevent people talking to him. The thinking being that when he realises all the ways he can control his environment to feel comfortable he might not need to go as far as not talking to control his interactions with the outside world.

Caveat that it’s not a long term solution and I’m not suggesting he should never talk to anyone ever again etc etc

What you say is loosely what we do tbh. Choosing a seat in a cafe is tricky, it has to be quiet, it in the middle, it right beside anyone else etc. we manage for the most part and if we are somewhere that's too busy we juts get take out. It's never a problem though I have been parenting autistic children for over 20 years and I'm confident I'm doing right by them. The older one was very different but I took an 'in your own time' approach there and It had paid off massively. I am fully aware that younger DS isn't as able and will need a lot of support into adulthood.

It isn't about him being able to talk though, it's the distress he feels when someone talks to him that's the real problem. There is never any expectation he will have to speak to anyone. He can't do it but more importantly he can't cope with anyone talking to him.

obvs in a different situation to you but my ds is autistic and honestly I’m trying to hard to stop some of the prejudice against autistic kids and I really don’t think that having a lanyard that says ‘don’t talk to me I’m autistic’ is helpful for the community.
If it could be possible to have something that requests the behaviour you’d like to see ‘please leave me alone’ or ‘I’m having a quiet day’ that might be better for getting the effect you want while not teaching NTs that autistic people should be left alone.

I'm sorry but I have to prioritise my son over 'he community' - he is an individual not a representative for all.

I wasn't trying to teach anyone that autistic people should be left alone btw. I'm talking about my child at this time. That absolutely did not mean all autistic people or forever.

I am butting out as my advice isn't perceived as helpful, but I do have to come back to correct the previous poster who said SM is a control issue.
It really isn't. It's a phobic response to the expectation to speak or a side effect of severe social anxiety. It's not about choice and it's not about control.

https://www.nhs.uk/mental-health/conditions/selective-mutism/

This thread has taken a bit of a turn...

Anyway I linked up page to communication cards. If he had one on the table at all times (kind of proactively) , kind of where the waitress would look when tending the table, I was hoping it might prevent approach. It could just be on the table, face up. "I'm having a quiet day today". "i don't feel like talking today" anything he wants.

Anyway I hope he can manage. It's lovely you're trying to work this out and help him in the way you think is best.

I work in an entertainment venue and chat to all the kids, lanyards don't change that. It will make me very aware of approaching kids wearing lanyards, I try to read their body language very quickly and will react to their actions. If I can see the child doesn't want to engage, I look at the whole party and smile say have a great time.

I'm also autistic, very late to diagnosis.

I agree that SM isn’t a control issue but an anxiety driven inability to speak that is partly psychological, partly physiological.

However, the need for control can be important as loss of control, or being ‘pushed’ can increase anxiety, thus increasing the inability to speak.

This is especially relevant for people with a PDA profile of autism.

I think the advice from the pp who works for SMIRA is really great, and it’s a technique I will use. I wish I’d known sooner. However, I agree with OP that her ds is not at a stage where that technique can be implemented.

My dd wouldn’t have left the house without the reassurance that I would step in and speak for her, when her SM was much worse. And I wouldn’t have wanted her to be completely housebound as her mood deteriorated etc. Her specialist SALT was clear that the initial target was for her to be more comfortable in public spaces. It involved taking her out to the same cafe daily just for ten minutes.

I completely get where you are at, OP, and agree with what you’re doing.

I think a zero pressure approach was essential for us as any pressure, however gentle, increased anxiety.

My dd isn’t stupid and would have seen through the technique described above immediately I think, and perceived pressure to speak, including feeling that I wanted her to speak, and that she was letting me down by not.