Autistic son with reactive mutism wants distant university, how to support?

[elliejjtiny]

Dc2 has autism and reactive mutism.

He has decided he wants to go to Buckinghamshire new university and he has had a conditional offer. His Dad took him to the offer holder day and he said he liked it but seemed more interested in the park run than the university (running is his special interest). It's 3 hours drive away from us and I don't know how he will cope but he is determined he wants to go, mainly because his brother is having a brilliant time at university.

Is it possible to just let him try? It might not work out, but you won’t know unless he’s given the chance.

I do understand how hard it is, I have a teenage daughter with autism. In the past, because she struggled so much, I went into new situations assuming she wouldn’t cope. Over the last year, I’ve stepped back a bit, and she’s managed far more than I ever expected.

Teach him some absolute basics:

• Three very very easy nutritious evening meals. Three nutritious lunches - or the most nutritious choices on meal deals in shops near the uni. Simple quick breakfasts.

• How to get home to you at weekends by public transport if he needs a break.

• How to sort washing and use the machines on campus.

• Socially/ emotionally, strongly encourage him to take up three things that connect him, as isolation and inability to make close friends can be an issue for autistic students. One physical thing - sounds like run club would be a good choice; one community thing - maybe helping at a soup kitchen or joining a church if he has faith; one creative or fun or silly thing - maybe singing in a choir, a warhammer or cosplay society. That way, even if close friendship takes time, he is not stuck in his room all day every day.

• Please encourage him to join any uni or local autistic support group or events society. And if he wants to start dating,suggest he signs up to autism specific OLD as it really ups the chances of meeting people you feel comfortable with and can be yourself with.

I know autistic people who have thrived at uni and some who really went under but pulled through, and some who found it wasn't right for them and dropped out. (Same is also true for NT people I know.) If he likes the uni, he may as well give it a go. At least 3 hours away is not impossible. He could come home at weekends and you could visit if he needs some support.

My Autistic DS is at University - 8 hours travel from us. I was very worried about it, but he is thriving.
What has worked for him:
Learning to cook. We did this the year before he went to Uni.
He did his own washing during school holidays and when he didn’t have a lot of school work on. I can’t emphasize how important I think this was.
I taught him to clean a toilet and sink - he might not do or often but he knows how to do it.
Brought him a dishmatic and he keeps his washing up liquid in his room.
Most important was his attitude- he tried clubs relating to his interest and has participated. He pushed himself a little bit outside his comfort zone.
He’s really having a great time - to the extent he was grumpy when he came home at Christmas because he wished he was back at Uni.
We also stayed an extra 4 days once welcome week started just in case we were needed - but we were not.

@elliejjtiny I’m slightly amazed at the choice! Why there? It’s a rather boring town and how do you think he will get home? Railway links fairly good but I’d be bored to death there.

You do realise that not everyone is you and they want different things? Just because you’d be bored it doesn’t mean it’s wrong for OP’s son.

Get all uni support in place in advance. DS uni has a set up where they have a health safety plan scheme to support students emotionally as well as with health conditions. You might end up with specific suggestions on various things like accommodation, well being etc.

He is an adult at 18 and can make his own choices, I would back him up and be there when he needs help, but let him figure out what he can.

Mine (also ND) goes, and has found it easier in some ways than expected, but harder in others. Communication, advice, flexibility and freedom to come home if overwhelmed are all good approaches to use. Plus the practical skills mentioned by previous posters, so they don't get overwhelmed by sudden responsibilities.

Make sure the uni is aware of the diagnosis, as it will lead to help and various useful things being offered to him to assist in getting an education.

Life is hard enough being ND, a degree may help him in future with employability or ability to cope with challenges outside your control as parents. I would support him, he will quite possibly have a good time overall and enjoy it.

To add, mine has adaptations like, will not be called on by lecturer to answer in class, can pause exams a certain amount of times if needed, can leave the room if needed no questions asked, can access a mentor to touch base every week, various things can be tailored to help get them through it.
Go to some open days and ask specific questions, the support is much better nowadays than it was (tho not perfect!).

Thank you. His main issue is that he won't ask for help if there is a problem. This has got more problematic as he has got older and the expectation is that he talks to school, college, drs etc himself rather than us do it for him. He can't go to a medical appointment by himself because he can't speak or communicate with them at all.

What does he think the best solution to such issues would be, if they arise? He has issues that may cause some difficulty - everyone has, in different ways – at various points in life. The important thing is to never berate himself for them, but to accept they exist and find solutions that may not be 'normal' but they are better than shutting down.

e.g. Could he write down medical problems and hand them to the uni GP. Ensure the GP is aware that he has reactive mutism. He could also add this to the note.

If he has psychological problems, he can ask NHS for a text-based therapy sessions.

Can you discuss some scenarios with him and ask him what he feels is the best way of dealing with them. Having a plan in place might really lessen the stress if problems arise.

Will he talk to you on the phone or via a video call? I know it’s quite a distance, but would it be possible to meet up with him for a catch up every few weeks? That way you could get ahead of any issues which might arise.

Is it the one in Wycombe with a second campus in Aylesbury? Definitely a surprising choice, I assumed all the students that went there were local and went there to avoid having to live away from home but I guess I am proven wrong! On the upside, it will be a much slower pace of life than big University towns and he's less likely to end up naked and clingfilmed to a lamppost at 3am.

What does he want to study?

Sorry to be an arse, but there's no such thing as reactive mutism as a diagnosable or recognised condition.

The diagnosable condition is selective mutism. Did a professional tell you "reactive" mutism? If so that's a worry.

https://www.selectivemutism.org.uk/smiras-statement-on-understanding-and-supporting-selective-mutism-2025/

I would tell him that he can go to uni if he wants, but in view of his SM and autism it would be a sensible idea to defer for a year and work on his confidence before he heads off. Do you have any help with the SM?
I would also try and steer him somewhere more local - I am sure lots of unis gave running clubs.

It’s all very well saying let him go and see what happens, but uni is expensive for the family and it’ll be a big self-esteem hit to fail and come home.
Would he consider an agreement where achieving x things leads to you supporting this? My cousin ended up supporting a flatmate at uni and it was very tricky as that person wouldn’t have family / professionals told until it got to crisis and it effected everyone, principally the young man involved.

Maybe I've got the name wrong then. I will check the report from the psychologist. It's definitely not selective mutism.

Honestly OP if he is considering moving three hours away it seems to me he believes he will manage the communication. You maybe don't agree but you can't possibly say that! Let him try. As an SLT I know as you probably do, that a big change in circumstances can be a trigger for improving communication. Either as a prompt to engage with therapy or in and of itself.

The thing is, there was a discussion paper put out about a year ago by two people in the UK that made a suggestion that selective mutism might be usefully divided into selective mutism (in this paper, but not elsewhere in SM research, defined as a phobia of the expectation to speak) and what they proposed as "reactive mutism" which they felt was more of a shut down in autistic people. They gave a seminar which a lot of interested people attended and somewhere along the lines it got lost that what was put out was just a suggestion for discussion, not an official redefining of the condition.

Actually selective mutism as a diagnosis is based on the features not the cause, as in the position paper SMiRA that national charity released. In SMiRA's view it's all SM but needs proper attuned support. The danger with professionals giving the name "reactive mutism" is that you may think it's a different condition and not get plugged in to what SM support and practitioners are out there, and it might make PIP harder to get as the named condition isn't actually a "real" condition.

Not your fault at all!

It's definitely reactive mutism. The report says autism, reactive mutism and alexithymia (hopefully I've spelt that right.

Sorry, cross post. That makes a lot of sense.

Then your diagnoser has not understood that reactive mutism is not a diagnosable condition, just something someone has suggested in a discussion paper. And that's unhelpful!

You can't just diagnose conditions that don't officially exist in the diagnostic manuals.
I would ask them to change it to selective mutism!

Anyway if you post on the SMiRA Facebook page, I am sure you will get relevant advice from families and others who have been there!

I have one with ASD OP and to be honest I think this sounds like a bad idea. I completely disagree that you can't/shouldn't mention that you don't think he is going to cope with the required communication being so far away - I think it's important to be very straightforward and honest. Not that it might make any difference if he is set on it!

DS is actually with BNU and hates it, he's had 4 course leads in the last year and a half and says he's hardly learnt anything. His assessments are either multiple choice or so short they're barely worth writing (think 1000 words). It's definitely not a place worth getting in huge debt for IMO, but he's there as part of an apprenticeship. It is supposed to be very good for MH nursing I think but overall it's ranked 97th in the CUG.

Are there not any uni's nearby that you could talk him into that also have running clubs? I think it would probably be easier to try to talk him into somewhere nearby that has amazing running opportunities than try to talk him out of going somewhere because it's 3 hours away.

Make sure he has disability support and disabled student's allowance in place before he goes. My DD got an hour a week with a mentor and an hour a week with an autism communication coach whose job was to communicate with staff on her behalf.

My much younger DS has what's now called "situational mutism" - used to be called "selective" ie he can talk to some people, mostly family and existing friends but not new people or in new situations.

He recently started at a new school and couldn't speak for the first week or so, but I explained what it was to his form teacher and she explained to his classmates, and they all agreed not to try and force him to talk (which is what people tend to do, trying to be helpful) but just to wait for him to thaw a bit...it took longer with some people than with others, but by the end of the term he could speak, just, to most of the people he needed to communicate with. His SENCo also suggested that he carried a card explaining the condition that he could show to new people - in the canteen for example - but he didn't want to do that, so one of the people he could whisper to interpreted for him for a while.

Is this something you could do for your DS, prepare the environment to be as helpful as possible...and then (I know it's scary!) just see how he gets on? My DS now won't shut up most of the time, but is still silent in some classes...but he copes well enough most of the time and school is a huge success. Such a relief!