Sister diagnosed with ASD: now everything's supposed to be all right...

[nomorequinoa]

NC for this, long-time poster. My DS is in her late 50s. Following a grievance raised against her at work by a colleague who accused her of being aggressive and bullying, she was referred to a therapist/ psychologist by her workplace, who suggested she might be high-functioning autistic. DS has spent serious money and time obtaining a diagnosis and now officially carries the ASD label. Her workplace has taken note and is now supporting her. I think the grievance really shocked her. She's revealed that she left her previous work after colleagues 'ganged up on her' in her words, and made her life there difficult. She felt victimised. In the more recent incident, she was shocked to be accused of being the bully.

The diagnosis explains a lot. Her very black-and-white attitude to everything, the lack of shades of grey. Her loudness (apparently, I didn't know this). Her apparently lifelong anxiety and depression (this was all news to me, she has never mentioned it before). The angry, indignant flare-ups over minor issues that have meant that I, and most of the other people around her, tiptoe around her and, frankly, limit the time we spend with her. You can see from her face what an angry person she is: she's had deep frown lines since she was in her 30s.

She's said awful things to me and others. She's always said she just tells it as she sees it. She's very intelligent and super-rational. Most of the family is low-contact because, although when she's good she's pleasant and interesting to be around, there is always the risk of an explosion. All three of her children limit the time they spend with her. They are really nice young people and they love her, as do I — but my goodness, she can be difficult to be around.

So anyway, we met up a couple of weeks ago and she told me all this. She's very relieved at the diagnosis. She says she'd always suspected that there was something going on that made it difficult for her to relate to people. But from what she said she seems to feel that, having been diagnosed with ASD, everything's all right now. 'They can't sack me now that I've got a diagnosis,' she said when talking about work. She seems to think that it's okay carrying on flaring up at people and that the ASD explains everything. I think her expectation is that now we can all be one happy family, knowing that if she's foul to us it's the ASD talking, not her. I did ask her what she intends to do to improve things and reminded her of something she'd said to me earlier this year, insulting me because I happen to hold a different view from her on a particular subject. She apologised but said that she still thought she was right and I was wrong, and I could see she was about to take another pop at me when fortunately someone else interrupted us and I escaped.

I've been mulling it over all week and feeling increasingly annoyed. Sad and glad, too, obviously, because it explains things. But I can't forget how dreadful she was to our lovely mum, or all the times she's put me so firmly in my place that I've had to walk away for weeks and months at a time to recover.

Where do we go from here? Has anyone else been through something similar?

I think if you are a long term poster, as you claim, you already know that the above isn’t ASD.

I find threads like this a bit awkward as it feels I am being encouraged to be unpleasant about someone I don’t know and agree what an awful person they are.

I am a long-time poster. My sister does have a formal diagnosis of ASD. I am not asking anyone to be unpleasant about her. I'm asking for reflection from those who have been in a similar position — when someone they love but have also struggled with, gets a diagnosis and thinks that this will somehow make everything better.

Coming from the other side op I'm positive I could get myself a diagnosis if I really wanted to but I would in no way let it excuse any of my unreasonably behaviour

A diagnoses might help explain certain behaviour but it also means the diagnosed person is more aware of their behaviour and should take steps to reduce any unpleasant behaviour towards other people. It isn't an excuse to be rude and selfish.

At the same time, you and anyone around her can decide that you don't want to have to put up with it. Even if there are things she can't help, whilst you try to be more patient, you don't have to stick around if it damages you and your wellbeing. You can decide your own boundaries in your head. What you can and can't deal with. What you're willing to overlook and what you aren't. You don't have to discuss them with your sister if you think it won't get you anywhere. But you'll know when to walk away and distance yourself.

Yes when my DH was finally diagnosed, he seemed to think it meant he could just behave how he wanted to. It was a bit of a process over a few years before we reached an equilibrium where I accept that some of his behaviours are outwith his control and he accepts that some of his behaviours have to be moderated and he cannot just handwave it all away as ASD. I did tell him when I felt it was simple emotional abuse but he felt I was at times emotionally abusive. We're on an even platform now but it took years to work it all out.

Is your sister seeing a psychologist? It took therapy for DH to gain insight into his behaviours.

They can sack or redeploy someone on capability grounds.

Just because someone has a disability or diagnosis, doesn't mean they have a free pass.

She needs to re-think her career and see what she's suited to.

She may never be management material, if she can't manage and adapt to social situations.

No, that definitely sounds perfectly possible with autism.

She's had a very very late diagnosis and is yet to learn enough about it to realise that whilst her tempers and meltdowns and blunt rudeness etc are most likely her autism, that actually she is still expected to learn ways to manage herself as best as possible so as not to be a c*nt.

I say this as an autistic person.

I agree.

'now officially carries the ASD label'
Not a label to be carried. Intrinsic part of her and diagnosed disability.

Also yes not a free pass to be rude but you use some very ableist language too.

You can't separate her from the autism. She doesn't be nice when she's being her and when she's rude it's the autism. You haven't really understood the nature of autism.

Autism is a different brain. She has had this different brain, undiagnosed, her whole life. Because of this different brain she will have made social errors, been thought weird or unkind, throughout her life. If she had been diagnosed as a child, people would have had a different understanding of her and would have acted differently in response to "bad behaviour". But she wasn't, so they didn't, so she shored herself up as best she could against people she didn't understand and who didn't understand her. She is as she is today as a result of navigating her atypical thinking style in a judgemental world. She is a product of every misunderstanding, every bewilderment, every hurt, every perceived bullying incident she didn't understand and every time she perceived she was being bullied.

This doesn't mean she has a get out of jail free card. It means that hopefully she can begin to understand why things happened and people will handle her differently and in turn, she may handle things differently knowing she does have a minority brain type. What she can now have is insight. If she describes a scenario you could say "as an NT person, this is how I might have handled that" or similar.

My dad is certainly autistic. Not diagnosed as in his 70s. Since we have understood this, we find it easier to manage his apparent self centeredness, his obsession with his work (still working every day in late 70s), his failure to understand the importance of milestones such as birthdays. He isn't intentionally hurtful and he isn't a bad person. He is a man with autism who has found a way to navigate life - marry a kind woman who covers for his social issues, work in his specialist field every single day of his life.
He is who he is.

I guess that's where I'm at sea, @fedup078 . I'm not sure I have the language to express this well, so forgive me if I lack nuance — but does having an explanation of what's going on also help her understand and mitigate the worst excesses? I'd really like to think we could work out a way to be more comfortable together. I can do my bit by being more understanding and putting her responses into context now I know. But if she's going to say 'I am who I am and you just have to accept me' (which seems to be the line she's taking with her employer) we seem to be just where we were years ago.

Thank you for writing this. You have articulated my thoughts exactly.

It's incredibly difficult to understand the unwritten rules when you are autistic. I've been accused of bullying and was stunned as I was terrified of the person accusing me. Trying to understand rules that aren't written and are contradictory against a backdrop of really shitty experiences as a result of something you don't know you are doing is so tough. Its all very well saying you can learn how not to be a c*nt (which I'm not) but how - who teaches you? There's no resource for anyone to learn this stuff.

I don't think you should underestimate the struggle that life will have been as someone with undiagnosed ASD.

However, having ASD is not a reason for all of her behaviour.

Nice person with high functioning ASD uses the diagnosis to understand how they function and to put coping mechanisms in place where possible.

Someone who happens to have ASD but is not a nice person uses their diagnosis to excuse poor behaviour.

I know people with ASD who work incredibly hard to understand why their relationships are difficult and to put measures in place to make things workable.

Thank you so much for your response, and I'm really pleased that you and your DH have found a way through it. My DS didn't mention any ongoing therapy. Perhaps that's something I can talk about with her when we next meet up. She says she feels lonely and as if people have pulled back from her all her life. I don't know if it's possible for her to roll back from her brutal truth-telling but I think she'd be less lonely if she could.

layladomino, thanks for your reflections. I would be more than happy to go halfway to meeting her if she can come halfway towards me. I, and her children, and her ex-husband, have all felt the need to keep a distance to protect ourselves. We all love her. I think the work grievance has made her stop and think about her behaviour at work, but I was hoping for an indication that it might also make her a bit more thoughtful to the rest of us, too. But then I thought maybe that's unreasonable, maybe she can't...

@LittlestBaoBun , thank you. I've spent most of my adult life wondering why we can't get along better and about why she had the need to be so hurtful and damaging. I'd love to have a good relationship with her. I see other people rubbing along lovingly with their siblings and it's always been a mystery to me that we — who share the same basic values and are interested in similar things — have never found a way to be easy together. I've always been waiting for the next blow. I would love that to change.

Autism doesn't make you an asshole.

Some assholes happen to also have autism.

Just saying...

Thank you, that's a really helpful insight. I was stunned when she said she'd suffered from anxiety and depression all her life because I always experienced her as someone who went her own way, doing her own thing, with a great confident force about her. She seemed to know the rules. But I'm guessing that was just covering up.

Would a therapist be able to help someone in just the position you're describing find a way of thinking about and changing their behaviour? Presumably it would need to be someone with specialist skills.

OP, irrespective of her diagnosis, you are correct to protect yourself, as are her children.

You do not owe her yourself offered up as an emotional punching bag.

Keep your distance and protect yourself.

But maybe she just bullied or conned the doctor into the diagnosis that suited her.

People who insinuate a diagnosis of autism can be bought really demean the whole system.

How much do you know about the diagnostic process, which tests are used and how they are scored, the qualifications of the doctors and professionals who carry out the tests etc?

Are you aware that many of the professionals who dignose privately also work for the NHS? Patients have the same diagnostic tests by the same professionals no matter if NHS or private, the ONLY advantage of a private assessment is you're seen quicker. NHS waitlist for adult assessment is around 3 years, private is weeks or months.

Paying for an assessment is perfectly fine. Nobody pays for a guaranteed diagnosis, the system does not work like that. Some people who pay to be assessed are not diagnosed.

You sound like a prize can't tbh. Doctors aren't bullied into giving wrong diagnoses.

That's a really horrible thing to say. How can a stranger diagnose someone they don't know as having a personality disorder and conning the autism assessor. It's actually really difficult to get an autism diagnosis as an adult and the process has a lot of different steps.

I'm autistic, diagnosed in adulthood and the diagnosis is not a get out of jail free card. Autism is in part a social and communication disorder so it is not surprising that your sister has struggled and behaved badly. It's also not surprising that she is an angry person as growing up undiagnosed means you are likely bullied and ostracised and don't understand the world.

I have spent a long time learning better communication skills and better emotional regulation skills so I have fewer meltdowns. It helps that I have a family member who will tell me directly when I am being rude since I don't notice when I am doing it.

I don't know if her work will help her with communication strategies at work but it sounds like she needs some more support, but that will only work if she wants that support and to learn how to interact with the world differently.

It is worth her contacting the autism organisations to see if they offer post diagnosis support or if she can afford some private therapy with someone who is an expert in ASD.

I've got sort of a finale issue with dd 15 in that she things her render diagnosis excused all her behaviour and get she out of all things she doesn't fancy doing.
We ended up drawing up a sort of behavioural agreement that we bit adhere to in theory-she promises to at least try to do x, I support her by doing y kind of thing.
And I've stressed to her that she isn't defined by her diagnosis-it doesn't limit her but it also doesn't mean she doesn't have to try at times to recognise the way she is behaving and how that affects others.

*similar

No, I know I can't separate her from the autism: I get that, I really do.

But as the incident at work has clearly given her a bit of insight I was sort of hoping that she'd show some insight into her relationship with me. And actually, she did apologise for what she said to me a couple of weeks ago and she doesn't often apologise. So that's a start.

Thank you: lots to absorb in your post.