Adult family member with autism

[masukaslab]

I know I will probably offend some people, but I can't cope much longer. I have a 20 year old nephew with high functioning autism and he has taken to contacting me multiple times per day/night and at the moment it feels like my phone's sole purpose is to have contact with him and nothing else.

A usual day: I will get a text at 6am asking what I am doing, I explain that I am going to work, he proceeds to text me most of the day if I reply or not, if I don't reply in literally three seconds he will then call me, if I don't pick up he will message on facebook, if I don't reply to that I get a messenger call, then the "what have I done wrong?" "why have you fell out with me?" texts will start and I feel like I am constantly telling him I haven't fell out with him, just sometimes I'm busy and can't reply.

He rang me at 3.30am last week and woke us up, then when I answered he asked if I wanted to go on webcam for a chat, I told him it was way too late and he needs to stop contacting me at this time, he replied that he forgot what time it was. He thinks nothing of calling me at midnight to ask what I am up to.

This has been every day and every night for the last four months, I have told him multiple times that it is too much contact, I have told him I will call him on certain days of the week, I have tried talking to his mum, and all I ever get from her is "He has autism, you have to take him as he is, you have to accomodate him and his needs" She just tells me to turn my phone off when I don't want contact with him, but why should I have to do that and miss calls/texts from other people, including my job.

Its got to the point where I can't go for a five minute shower without coming back to my phone to see 9 missed notifications and its too much for me, I am by default a quiet, private person and because of this I have no idea how to handle this, I don't even have this much contact with my Husband!

Does anyone have any advice? Its not that I never want contact with him, I'm not saying that at all, its just I can't handle it every single day and night, talking to him is not helping at all because he will go a day then it all starts again because he "forgot" what I said to him the previous day.

It's time to get tough and make very clear boundaries. He may have autism, but that does not give him free reign to hold you as an emotional hostage. Tell him you love him, you love communicating with him, but if he refuses to follow the rules you set down, you will be forced to block him from your phone.

I think you need to set very clear boundaries, only text between x and x times. Keep reinfortthese boundaries until he gets it. Alternatively change your number and don't give it to him/get a new phone just for his texts which you can have off most of the time.

Exactly what aquamarine said - your nephew needs clear and consistently enforced boundaries. My 12 year old DS has autism and can be a little like you describe, and a lot of the time I explain stuff to him e.g. why something is wrong / hurtful, but he doesn't actually change until I threaten punishment (recently: 'stop keep copying Horrid Henry or I will take away your iPad for the whole day'). Sometimes even that is not enough, I have to carry out the punishment once or even twice and then he'll stop. So in your case you can threaten to block your nephew from your phone unless he follows your clear rules. xx

My son would do just as you've described op if he had his own phone (he's 12 and has autism). He constantly wants to contact family members.

He's not 'holding you emotional hostage' as one poster put it . There's just a complete lack of understanding of boundaries and your nephew needs supervision with that.

Write down clearly the days and times when he is allowed to contact you, so he cannot forget the rules in a moment of enthusiasm! Does he live at home? Sit down with your nephew and whoever he lives with so you can all agree the rules together.

I agree with 4am plus I would add that he needs to check with his mum before making contact. She needs to be involved in the boundary setting.

Yes, I recognise this too with a friend of mine. I smiled when I read it. No sense of time, anything but an immediate response elicits another message immediately.

If I am uncontactable for half an hour, I get 20+ messages that go from "what are you doing? Hope you've had a good day x" to "what have I done wrong?" "I've done nothing wrong" and being blocked with the final words of "don't ever contact me again" and then ignored for a week.

Rules I have put in place are:

There are certain days of the week when he can't contact me. This is because the likelihood of me having chance/time to respond is slim and so it will trigger the over texting. He finds it hard to stick to it, but it makes it easier when I have to say, "But it's Thursday. The rule is that you don't text on a Thursday. You broke the rule."

When I say "Good night I am going to sleep now" I will not read or reply to any messages that come after it. I can't. Because I am asleep. That makes sense so it was the first one to stick. He still forgets sometimes, but in the main...

Do not send more than 5 messages without having received a response from me. He finds this one hard because he sees it as me being unnecessarily harsh and not making an effort if I don't reply so I've had to use visual cues to demonstrate that it might be because I'm in the bath or at the supermarket or at work or the battery might be dead or any other number of reasons rather than not caring. Which is his default belief.

In order to help him manage his life better generally, we have implemented a diary to go into 2018. It's colour coded so different people/activities have different colours. I am pink. He can write in his diary when he has texted me and seen me but it also means he can plan and write in when he is next going to do so.

He's really enthusiastic about the diary and, although it's very early days, it's working so far... I don't know how that could help you though.

I have explained to him that it is his responsibility to manage his feelings around this and not my responsibility to make sure that I am always available to speak with him.

I wouldn't support the threats of blocking without trying other strategies first. It's a hard one but blocking just feels like such a blow to someone with autism it's likely to make the anxiety far worse. I tried removing the 'last online' from Whatsapp and it triggered a huge meltdown because it felt like such a huge rejection. In the end he deleted whatsapp because he understood it was reasonable for me to be online and then go offline, but when it actually happened, it felt like I'd turned my back on him and was ignoring him and would trigger a stream of "you were online but you've gone offline. I don't understand. What have I ever done to you?" when I might have been chatting to someone else and not even realised he was online!

The man in my case is mid 30s and has had no training in this sense from family so it can be exhausting. He was incredibly chaotic in his thinking when we met, but we are getting there slowly. It is better. He smashed his phone in the early days of it happening, then he progressed to deleting his email account and now he just ignores me. So there is progress...

Actually, I'm going to c&p your OP so that I can talk it through with him. It might help him to see it is the autism and not 'him' or 'me'.

"He has autism, you have to take him as he is, you have to accomodate him and his needs"

This is actually really unfair. It's likely he'll never really 'get it' from your perspective but he might want relationships in the future or get a job and if no one teaches him more appropriate ways of managing his anxiety/impulses and at least remembering that other people have their own needs, even if he can't predict them or doesn't agree with them, then it's doing him a great disservice.

You sound like a wonderful friend coldandfrosty

I think there's a balance between accommodating his needs and attempting to broaden his understanding. My son has a list of possible activities someone might be doing rather than talking to him online which he repeats to himself. eg. going shopping, visiting friends, at work, driving...

He's worth it 4am. He's a lovely person and a good friend. He just does my head in at times too

@masukaslab

Have you made any progress with this?

I think I would get another mobile and inform everyone except him of the change in number. Keep the other mobile for his calls only. You can then set the boundary i.e. You will reply to texts at xx time and you can call me from x to x time. The phone will be muted at all other times .