When a Young Person doesn’t want to interact with services

[Verbena17]

Hi,
I’ve been reluctant all week to post, because I’m thinking there isn’t really a solution. 😢

My autistic son is now 19 and his generalised anxiety is no better.
last time I had to take him to see the GP, he asked me to talk to her for him and towards the end, I forgot and I prompted him to reply. Afterwards, he said he’s never going to the GP again because I ‘made’ him speak. He said he could feel himself going bright red in the face (he did) and felt his eyes welling up with tears.

I feel so bad for him - it’s always like this. Unless it’s a person he knows super well, he won’t talk to them. And it’s now even worse that he’s away from school and not being seen by any health professionals - his anxiety about speaking and seeing people has become worse.

I am worrying all the time about his future. He’s a very lovely guy and has so much to offer the world but he doesn’t want that. He has just started his own little online business that’s promising if it goes well but other than that, he has nothing in his life really. It’s a struggle to get him to see relatives and although he’s in sporadic contact with 2 old school friends, it’s only the odd text message and he doesn’t want to go and meet up with them.

My question is are there are services me as his mum can contact and talk with? NAS - will they be any good? Do they offer anything just for parents of young adults? I can’t see much on their website that looks relevant.

Also - anyone know if GP surgeries will have some sort of policy for autistic young patients, including what to do if a person is selectively mute or just too anxious to engage without a parent/adult there too?

The hardest thing is he is very eloquently spoken and has no difficulty talking to me and his dad and sister. He doesn’t have any speech impediment, although he needs some time to process multiple pieces of info. He is extremely intelligent and great at logical thinking but it’s just not enough to make him want to try to do ‘adulting’ himself!

Any suggestions - steps I can take to help me to help him - I think that might be the first way to go, rather than me trying to get him joining clubs etc - he just won’t do that.

Does DS have a hospital passport? Despite their name they aren’t just for hospitals. They can be used at the GPs and other appointments.

Is there one GP at the practice who is more approachable than others? You could approach them with the aim of them understanding DS’s needs better and the longer term aim of hopefully building some form of relationship with DS.

Can DS communicate by writing?

You can register as a carer at the GPs so you can act on DS’s behalf e.g. speak on the phone to the GP.

It sounds like can’t rather than won’t engage and he needs more support. Does DS have an EHCP? Does he take any medication?

Hi and thanks.
I've never heard of a hospital passport. Sounds like a good thing to look into.

DS used to have an EHCP but we with county ended it last year once he left 6th form. He wasn’t going to college and can’t engage with other therapeutic services so there was no point.

DS doesn’t want anybody other than health professionals to know his autism diagnosis. I still find that extremely difficult to support but it is what it is so we do.

The GP thing is complicated - they leave and then it makes it worse. It’s better that he doesn’t reply on one person because he has massive trust issues. If that one person then left, he would feel let down.

I do already have permission to speak to DS’ GP. They have a letter from him from when he turned 16.

This is NAS’ hospital passport. Your local area may have a local version. Sometimes called a health passport.

Thanks @Headfirstintothewild - so could we make that and give a copy to his GP to keep?

Yes, complete the passport, including the need for questions not to be directed at DS, and give the GP a copy to the GP for DS’s records.

It is also helpful for DS to have a copy to take to appointments (and for if there is an emergency) and for you (or whoever else is with DS) to prompt the HCP to read it before beginning the appointment. You may have to be quite insistent with this. Some HCPs think it is isn’t required and skim over the first page.

Appointments will take longer, but that is a reasonable adjustment the GP surgery must make.

That’s so helpful @Headfirstintothewild thank you so much 😊

A related suggestion, if DS isn’t already under the special care community dental service, it would be a good idea to get a referral. There will be a waiting list, so it is easier to sort now than waiting until a point when DS needs dental treatment.

A few years back, we went to a paediatric dentist - they were absolutely useless! Really poor communication with children, way too many people in the room, had no idea about autism - it was shocking!
Finally, after much begging and pleading and crying on my part, the city hospital agreed to remove 2 of his baby teeth under a general. But that was after a few really quite traumatic appointments with various dentists who really don’t understand humans…let alone humans who are autistic!

The last time he went to the dentist, just over a year or so ago, we went to a quiet private dentist in our town who was brilliant. Luckily, despite an eating disorder, his teeth were fine. However since then, he’s refused to go back - mainly as he has had bad acne and didn’t want to be seen!

Does anyone know of any way I can get good, solution based info from the NAS? Do you think it’s best if I just call my local office and ask? Just thought rather than me calling up unannounced, it might be easier if there was a scheme/service I had already got info about from here.

No idea how to get support from NAS, if you can find an email address an email may work, but I would definitely look at a referral to the special care community dental service. Work under GA or sedation isn’t unusual for them.

So this afternoon I posed the question to DS of us having a ‘hospital passport’ for him and also to give a copy to the GP.
His reply was;
”I’ll pass on that thanks”.

😩
He then went on to say I was causing him lots of stress about the passport and could I please not talk about it anymore.