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I need help supporting an adult with autism - if anyone reading this has experience of it, can you please help

(19 Posts)
ChristmasLightsUponTheTree Fri 14-Dec-18 09:16:43

I have a friend who has moderate autism and borderline learning disability. I'm hoping that anyone who has friends/family with similar will recognise some of this and be able to offer some advice.

He has no family support as his mum, who he lives with, also has autism and a learning disability. He has a number of friends - he is popular and well liked but his friendships are mostly superficial 'drinking buddy' ones - he says they don't understand autism - he is right. He has no involvement with any support agencies and refuses to.

During our friendship, I've supported him as you'd support any friend who needed it - to understand and manage a situation at work rather than walk out of his job; to resolve some family issues that were causing him distress; setting boundaries for himself in social relationships and understanding the need to respect other people's; basic financial management... some of it is really basic stuff that he'd managed to get to adulthood without anyone ever having done with him before and some of it is more complex.

When we met, he was completely unable to manage his emotions and was very reactive; he had very poor personal hygiene; and his lifestyle (albeit he held down a full time job) was quite chaotic. He is now able to use strategies to manage his emotions somewhat; is less reactive generally; is personal hygiene is much better than it was and his lifestyle is less chaotic - he has 3 stable friendships (inc me); a hobby that (outside of times of great anxiety) he enjoys. I think it would be reasonable to say that his life is better for having me in it and that is, in part, the problem. He has become completely dependent on me.

I am aware that what I am doing is, essentially, advocating for him in some respects and acting as a 'carer' is others. But these are within the parameters of a pre-existing friendship and I am happy for all of these to continue.

I do have clear boundaries in place, both in terms of our friendship and supporting him, and maintain these. But this is where the problem lies. In periods of high anxiety, he doesn't and interprets my boundaries as rejection and completely disregard and tramples all over them.

He is currently dealing with a situation that is devastating for him - it would be for anyone. But he is not managing it at all and is leaning heavily on me to make him 'feel better'. I can't. I can support him emotionally, logistically and practically but I can't make the problem or the pain go away and he is unable to manage it.

This is manifesting in huge anxiety on his part and this week he has sent me over well over 400 messages as a guestimate - over 130 of them were last night. These are essentially how his emotional meltdowns manifest and, obviously, there is nothing I can say to reassure or appease him. All I can do is choose to engage or not.

During these times, his messages are alternately confused; hugely contradictory; helpless; accusatory; catastrophising; desperate; angry; sad; repetitive; hostile; conciliatory and relentless.

Across this week, they have got worse because I usually see him one week night but was unable to this week due to ill health on my part - I explained this and he understands intellectually but emotionally is struggling with it. We have plans to meet over the weekend. I have tried engaging and reassuring; I have tried ignoring the more 'emotional' messages and repeating that I understand he is upset and that we will sort it out at the weekend; I have tried ignoring him and sent a message on the hour to reassure him that I'm busy/unwell and he isn't 'forgotten'. But nothing is working.

We communicate via Whatsapp at his preference. But if he sees I am online he expects me to be messaging him - if not he accuses me of ignoring/forgetting/not giving a shit about him. If I am not, he thinks I am out and ignoring/have forgotten/don't give a shit about him. It being 3am and me being fast asleep doesn't stop this from happening. This worse during a meltdown.

I feel under constant 'assault'. Last night he told me 3 times to "get offline" because I was online and not talking to him at that moment.

Part of it is 'time' issues - he doesn't 'recognise' that, at 3am, I'm unable to reply because I'm asleep or that at 3pm I'm unable to reply because i'm at work. Or that he might have spent 6 hours messaging me constantly and gets upset that I am not engaged in conversation with him for that entire time.

I am happy to be friends and support him but I can't live under this constant scrutiny and expectation. He expects a high level of/constant contact from me at the best of times but during meltdowns it's worse.

I hope I've explained this clearly enough.

Does anyone have any suggestions?

JoanneMumsnet (MNHQ) Fri 14-Dec-18 10:04:54

Hi, we're moving this thread over to our SN Chat topic at the OP's request.

ChristmasLightsUponTheTree Fri 14-Dec-18 10:22:46

Thank you.

I really would appreciate any ideas if people have any.

BlankTimes Fri 14-Dec-18 11:43:17

What you are seeing is the real guy, he feels able not to mask with you, this is how he is.

Anxiety is a driver for autism, as you've seen the higher the state of anxiety, the more everything else cranks up. ]
It's also difficult because no t#wo autistic people are the same, so you have to use strategies that work for them.

In your shoes, I'd re-set your boundaries loud and clear. Give him a list of what is acceptable behaviour re his contacting you on Whatsapp and what is not.
No waffle, no cushioning, only use the plainest of language so there's no other way to interpret what you have said.

Remember that emotionally he is very likely to be several years 'younger' than his chronological age, which is pretty evident from the way he's suffocating you and wants to be your only best friend and wants to hear that repeatedly from you.

Read up as much as you can about autism, it is for the most part diagnosed because of difficulties with communication.
www.autism.org.uk/

ChristmasLightsUponTheTree Fri 14-Dec-18 12:39:22

Thanks so much for your reply.

I do have a good understanding of it already; I knew what I was taking on and that's why I haven't walked away - it's not a friendship I have entered into lightly. This week, last night in particular, I have been completely overwhelmed by it though and just needed a bit of a vent as much as anything sad

You're right, he doesn't feel the need to mask around me, which I'm pleased about but 'suffocating' is a good way to describe it.

I am direct with him, which he appreciates generally but when he's in a meltdown he stops processing and reading what is said and completely forgets the boundaries. Reminding him at that point is pointless and only upsets him more. At the moment, it is happening daily and has been escalating for the past 3 weeks.

The rule for contact is that if he sends me 5 messages and I haven't replied then he doesn't message me again until I have. If I am unable to respond to the 5 messages then I am unable to respond to 50. But he forgets that. I don't think he realises how many he sends.

He also has a diary that we worked on together. He uses coloured pens to record in it - e.g. orange is work; pink is family; I am blue; he is green, etc... So he records his work shifts; my work/social commitments; when he has emailed a family member/his mum has an appointment; when we have seen each other; when he sees his other friends... He can 'see' then that I am busy; or he has been ill and that is why we have not seen each other etc.

It caused problems earlier this year in the snow, for example. He 'knew' that we hadn't seen each other because of the snow but emotionally all he 'felt' was that we didn't see each other for 10 days and he 'forgot' the reason for it.

He's also got a list in the back of his diary of things I might be doing that mean I can't reply: driving; putting petrol in the car; cooking dinner; helping my children with homework; on the loo; asleep etc. He is supposed to read the list to talk himself down from the anxiety and reassure himself that I'm not ignoring him because I don't want to be his friend anymore but because I'm just busy with life.

I made small credit card sized laminated versions of the reasons to put in his wallet in case he is out and doesn't have his diary with him.

He really likes the diary/cards and they do work quite well - when he uses them... but he doesn't use them when he is very anxious. Or before it's got too far to prevent it. He uses them during day to day situations that he finds stressful but not unmanageable.

I've never 'let him down' in reality but he feels I let him down often.

I've used visual representations to help him understand situations - social stories and cartoon conversations - but he is unable to retain that knowledge or to apply it to new situations - which I also understand.

It's also frustrating because he misrepresents it to other people. He tells people I don't make any time for him. And they take that at face value. What he doesn't say is that I had a bath and was away from my phone for 45 minutes and didn't reply to the 15 messages he sent me in that time or that I saw him on Sunday and Tuesday and will see him on Friday but on Thursday I saw a friend I haven't seen for 6 months. So I have other people challenging me on that too. His mother doesn't like me because I upset him. That sort of thing.

I message him similarly to:

"I am tired and I need to sleep.

I am going to bed now.

Please don't message me again tonight.

I will message you in the morning when I wake up.

Good night and sweet dreams" - that is supposed to be the sign that I'm not replying to any more messages but he often ignores it.

I format all my messages like that when he is anxious because he can't process complex sentences but the only part he focuses on is "don't message me" and understands it to mean 'ever again'.

His responses have been to send me 10 - 50 more messages asking him what he's done wrong; why i don't want to be his friend anymore; to say he understands I don't care about him and never did; he's all alone in the world and might as well be dead and then to smash his phone, delete his email account and block me from contacting him.

That happens less now, it's been a while since I was blocked but he still 'says' it and it's so hard see/read his distress; hard to be on the receiving end of it; hard knowing that there is nothing I can do.

I suppose I just wondered if anyone else used strategies that I'm not aware of that we could try!

ChristmasLightsUponTheTree Fri 14-Dec-18 12:47:28

I also know that he likes the strategies but not the effort it requires to use them. He'd rather I just did what he wants me to so that I don't trigger his anxiety.

ChristmasLightsUponTheTree Fri 14-Dec-18 12:47:28

I also know that he likes the strategies but not the effort it requires to use them. He'd rather I just did what he wants me to so that I don't trigger his anxiety.

ChristmasLightsUponTheTree Fri 14-Dec-18 12:47:41

I also know that he likes the strategies but not the effort it requires to use them. He'd rather I just did what he wants me to so that I don't trigger his anxiety.

GhostSauce Fri 14-Dec-18 12:52:53

Blimey, this sounds like a full time job.

Have you taken on too much?

ChristmasLightsUponTheTree Fri 14-Dec-18 13:03:48

Thing is, Ghost. He is better than he was but this current situation has just thrown it all in the air again.

It will settle.

I have managed down the days we see each other from 3 days a week at one point to 1. But he expects electronic contact to be constantly available.

BlankTimes Fri 14-Dec-18 13:37:33

"I am tired and I need to sleep. (this doesn't say you are going offline, will be asleep soon, it just says what you need to do at some point.)

I am going to bed now." (lots of people use their phones in bed, it's not direct enough)

I'd add "Do not send any more messages until I contact you tomorrow." to both your statements above.

Like I said, you have to make your communication absolutely crystal clear, he cannot pick up on inferences like the ones you wrote above, his interpretation of your words is much, much more literal.

It's really hard for NT people who are used to not saying exactly what they mean to turn that around and say something that cannot be misunderstood by a literal-thinker.

But he expects electronic contact to be constantly available
Tell him plainly No.
Could you arrange to have a different phone only for contact with him or one to have contact with everyone else.
Then tell him what times your phone will be on and he can contact you, or what times it will be switched off, or if that conflicts with your agreed lists go on a daily message of I am switching the phone off now and will message you tomorrow at [time]

When he's too anxious to look at the lists, just reply and say 'Look at the list' don't say anything else.

I know you want to help him, but you need to put your own family first.
He's monopolising your time, it needs to be reduced a lot. flowers

ChristmasLightsUponTheTree Fri 14-Dec-18 14:03:48

Thank you, Blank

I don't think I made it clear but I send the 5 sentences as one message but format it like that so that he can read it clearly but also so it's friendly communication. So I do tell him not to send anymore messages tonight but that is when he just focuses on the "don't send anymore messages" and that triggers his anxiety too because he interprets it to mean "ever again".

He knows the final line of 'Good night and sweet dreams' means I will not be checking my phone again or sending any more messages but also sounds 'nicer' to him than "don't message me again this evening". If I ask him what it means, he can tell me that. But it doesn't stop him from messaging me 30+ more times and becoming increasingly aggitated when I don't reply.

I have also said, "look at the list" but he perceives that as being 'unfriendly' and says he just wants to talk to me because we're friends and still perceives it as rejection. And as soon as I've replied with anything at all, I've proved that I do have time to message, I just don't want to.

The second phone sounds like a good idea. I'll have to look into the feasibility of it. I don't think he would react well to having the contact time restricted though. He is monopolising my time. He's scared of being alone.

Thank you for the suggestions!!

ChristmasLightsUponTheTree Fri 14-Dec-18 16:23:46

Oh dear.

I've been away from my phone all day.

He's sent me 37 messages that I obviously haven't replied to.

He left work early because not having heard from me all day and the resulting anxiety has made him unwell.

I'm concerned that, as much as he's benefitting from the support I give him, his over reliance on me means that my presence in his life is a negative experience for him.

BlankTimes Fri 14-Dec-18 17:27:43

It's also frustrating because he misrepresents it to other people. He tells people I don't make any time for him. And they take that at face value. What he doesn't say is that I had a bath and was away from my phone for 45 minutes and didn't reply to the 15 messages he sent me in that time or that I saw him on Sunday and Tuesday and will see him on Friday but on Thursday I saw a friend I haven't seen for 6 months. So I have other people challenging me on that too. His mother doesn't like me because I upset him. That sort of thing.

I'm concerned that, as much as he's benefitting from the support I give him, his over reliance on me means that my presence in his life is a negative experience for him

With the best will in the world, I think you are taking on too much trying to support him. You've tried your best but sometimes good intentions and friendship aren't all that's needed to help someone with problems, they are just not enough because the person needs the sort of help you cannot give. Sometimes it's best left to professionals.

He already has his mother and the other people you referred to above, so he is not alone. He also doesn't understand that he's misrepresenting you, as far as he's concerned, he is telling the truth, you have "abandoned" him because he couldn't contact you when he wanted to. (Despite that being impossible for you and anyone else)

You've tried your hardest, but simply put you cannot fulfil the needs he wants you to fulfil, i.e. being there for him whenever he thinks you should be, then when you cannot because you have your own life and family, he's "devastated" and falls apart.

Don't feel responsible for him, but do find a way to cut contact with him right down to something that's manageable for you.

I expect his Mother's seen this pattern of behaviour of his happen time and time again with people who have wanted to help then been unable to give him the "friendship" he expects because it's like coercive control. She'll be unable to explain it to him in any way he fully understands, but she'll be the one left to pick up the pieces when yet another very well-intentioned person has tried their hardest to help him and has had to stop because he's 'smothered' them.

This is just my opinion, I hope other people also express theirs so you get a more rounded view.

ChristmasLightsUponTheTree Fri 14-Dec-18 17:37:34

Sadly, I think you're right.

I know he doesn't realise he's misrepresenting me.

These people aren't his friends - they're people down the pub who he's just happy to rant about it to. None of these people choose to spend much time with him socially because, as much as they like him, they find him to be hard work to be around.

His mum is also autistic, has LDs and doesn't interact with anyone other than him. She doesn't understand either

Thanks for the feedback x

zzzzz Fri 14-Dec-18 19:49:06

It sounds thoroughly unhealthy. Your lack of boundaries is morphing him into a controlling stalker. I know you are trying to help but if he did this to another friend he could get into a lot of trouble.
Do you like him?
Do you enjoy spending time with him?
Do more of those bits and less of the bits you don’t like.

zzzzz Fri 14-Dec-18 22:04:54

Sorry that sounds like I think you’re awful or something shockblush what I really meant was that while you’re obviously being really k8nd, it might not be very helpful long term. It also sounds quite hard to keep up.

brew

Nettleskeins Sun 16-Dec-18 23:23:03

I think messaging itself can be quite counterproductive to those with autistic traits. It is an easy way for us to communicate but then it doesn't really encourage emotional feedback or learning to read other people's body language. I think it is also true that physically being present is much more comforting and supportive than online communications. For that reason, I find texting and messaging increasingly frustrating and misleading.

As an adult with autistic traits, I would say a very firm date on which you physically speak on the phone or meet and no messaging at all is probably a good way to reinforce the relationship friendship you actually want to have with him.

I've found NT people insist nowadays on emails and texts when a short meeting or phone call is a much better way of supporting someone and actually builds better communication and "reading the signs".

I don't use Facebook for this reason. Meeting someone for coffee, actually talking to them is the best way to build someone's communication skills, and to show a boundary (you cannot physiclaly meet someone for coffee 100 times a day)

then, see you in a fortnight, similar format. People often don't see their real life friends any more often than this when they have busy lives. It is normal to have these gaps. But he might not understand that is how most friendships work, and for that you migth need a Social Story...(google) when you talk through how friendships work.

My sister is quite brutal with me if I overrun parameters, funnily it happens with those you are closest too, I've learnt the rules for my friends, just often with my close family I forget and overdo it. But I learnt and am learning and have several good friends and a big supportive family.

Other family members who did not learn, and who I would also say had communication difficulties, have found it very difficult, and ended up being cut off or isolated as they were literally unbearable to communicate with, such was the level of demand. Better to be CLEAR on what you can do, than end up giving up completely or avoiding him.

Nettleskeins Sun 16-Dec-18 23:31:08

I think it is a very common pattern for an autistic adult to decide that someone has snubbed them neglected them and then accuse them of this when they next talk or ask what they have done wrong, when actually the other person had no idea that they had done anything more than a normal void in communication. But unless you leave these voids and stick with it, how is the autistic person to know that this is normal? and bearable? they learn it is bearable and it becomes less upsetting. You will see them again, you are still their friend but only if the boundaries are observed. whereas responding as often as they feel they want, wouldn't help teach anything long term.

I've also found this to be true with my son with autism who is 16. He too is learning to observe the voids and that not everyone will respond to repeated demands.

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