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'd meant to add that I do realise that understanding why someone is as they are really helps, so that's a first step — thinking of her as autistic, not just as rude and hurtful and angry. (Not that I ever thought her of her as just those things, but those were dominant feelings far too often).

See, ideally everyone involved reflects on what this means for them.
So your sister reflects on why other people react to her as they do, as well as other people understanding why she reacts as she does.

It can't only go one way.
She needs to take seriously that the people around her need her to behave differently, when she is able, as well as them needing to make allowance for her. It's a two way adjustment.

Yes: I just have to work out how to put this to her without setting light to the blue touchpaper. Or maybe now it will be different and I can just say it and then ask her to pause and reflect on her response. Perhaps this time she won't squash me.

Diagnosis is merely a tool for understanding how one’s logic/mind whatever works and in some cases the ‘label’ is useful in making reasonable adjustments.
Whether it CHANGES anything depends on the severity, specific presentation and effort involved.

Autism for example. No two are alike. Despite people saying ‘autism is a different way of thinking ‘ two autistic people might have completely different reactions to the same thing. Some dig their heels in, other are the opposite and very easily led.

You can’t really say ‘X is doing Y because of autism’ , for everything they do another autistic person would do exactly the opposite.

she has to want to understand herself. You can’t help her if she doesn’t want to. Maybe she has heard ‘diagnosis = it’s all ok’ and won’t accept that she has to put in the work. The only you can do is get a professional to talk to her about it. But you can’t do anything.

DP is autistic, I have ADHD (both inherited from our fathers) . As a couple and individually we have done a lot of work to come up with coping mechanisms, adjustments etc. It’s hard work.

A phrase that works well in my house is 'That's one of the things you tend to find tricky, isn't it.'.

When someone is ranting or claiming everyone else is being unreasonable, that statement tends to reset their thinking. It reminds them that they may have misinterpreted what happened.

It's alongside 'well, that's one of your strengths, isn't it!', which I use when he's cross with other people for not knowing what is to him glaringly obvious.

It's just a quiet reminder that we all have different profiles and will be better and worse at all sorts of things. Also, people are rarely being deliberately difficult, they just see a situation very differently.

I ask a lot of questions like 'do you think they wanted to upset you?' And 'do you think they realised how upsetting that was for you?'

It helps accentuate that people who do things you don't like aren't targeting you, they are just doing their own thing regardless of you.

Sorry if that's waffley! Just some reframing stuff that works round here!

Do you get anything positive from having a relationship with her?

I hear and feel you op. I have a sibling with asbergus and adhd and it’s tiring. I’ve limited contact to next to nothing now, It’s sad as we’ve both lost witnesses to our whole lives but it is what it is as I can’t carry on with the toxicity of no accountability because of their diagnosis.

You sound so mean and judgemental. Most people have frown lines because they're stressed and anxious, not because they're angry and mean! I have them because I frown at night and clench my teeth.

You also have an underlying attitude through your post that you don't really believe her behaviour is down to autism, that she may have only got a diagnosis because she threw money at it, that she's possibly lying about having been anxious and depressed or having been bullied.

It's all very 'me, me, me'. What about her? Yes, it's very hard to be around someone with ASD sometimes, but do you know what's much harder? Being a person with ASD. Perhaps you should do a bit of research on suicide rates among autistic adults, employment rates, rates of anxiety and depression, and maybe realise just how hard she probably has to try to do pretty much anything at all. You're very critical of her, but how often do you praise her and acknowledge what she's achieved?

I think this is good advice.

Yes. I've known her all her life. We share a past, memories, things no one else on earth would know. I love her: she's my sister. I know she's had struggles, I know life hasn't always been kind to her, but she was a dedicated mother who's produced three bright, competent, apparently well-adjusted children who I enjoy being aunt to.

She's an intelligent, creative woman. I can imagine that if it wasn't for the outbursts we might have been good friends. We've supported each other over the years in various ways. I don't have children. Our parents died a few years ago. I have some cousins but they are once-a-year sort of contacts. It would break my heart to have to distance myself completely, particularly now, particularly when I know there's a reason for her behaviour.

Picklemewalnuts: 'It's alongside 'well, that's one of your strengths, isn't it!', which I use when he's cross with other people for not knowing what is to him glaringly obvious.'

This is so familiar. My sister: 'What do you think about XYZ?' Me: 'Obviously I'm aware of XYZ but I don't have a strong opinion about it. Does XYZ really matter?' My sister, suddenly red-faced and furious and shouting: 'You're supposed to be the intelligent one in the family, you went to university! I can't believe it! How on earth you got a degree I'll never know...' And then there'd be a 20-minute indignant detailed explanation of the XYZ situation and the position I should take on it, with more rage about my inadequacies. And I'd drive home afterwards wondering what on earth I'd said or done to bring it on.

Aseagullatemybaby, I'm sorry to hear you've gone NC with your brother. Being witnesses to eat others' lives is important. I've certainly gone a few months without contact with DS at times. I certainly know that 'had enough of this shit' feeling.

I'm in my forties going through the diagnosis process. I certainly don't think the diagnosis would make anything alright, but it just helps me make sense of my past, and allows me to plan things a bit more.

It definitely doesn't mean I'm allowed to be rude or a diva.

She's an intelligent, creative woman. I can imagine that if it wasn't for the outbursts we might have been good friends. We've supported each other over the years in various ways. I don't have children. Our parents died a few years ago. I have some cousins but they are once-a-year sort of contacts. It would break my heart to have to distance myself completely, particularly now, particularly when I know there's a reason for her behaviour.

She will probably be very sad about that too.

I don't see why you would distance yourself. Why not try to meet her in the middle? Her entire life has been trying to conform to neurotypicals and how they think and what they want.

In the example you gave, she was trying to connect with you by asking what you thought of XYZ and you shut it down by saying you didn't have an opinion. That can come across as saying you don't give a shit about what interests her and don't want to connect over it. It wasn't right of her to rant about it, but maybe try to view things more from her perspective? The poor woman is probably sick to death of small talk and banal conversations. Normal life can be really, really taxing and alienating for people with ASD.

Your sister is at the beginning of a journey and so are you. She could try coaching (google Genius Within) if she‘d like support with navigating the world of work from the perspective of being a neurodiverse person.

You too will need to take time to work out what this means - where it helps you to forgive and understand past events better and how to negotiate things going forward.

Two friends have recently had a pre-teen child be diagnosed and THAT feels like the beginning of a huge lot of recalibrating, let alone this! In other words I don‘t think you or your sister need to deal with this all in one go, give it reflection time, maybe talk to a specialist counsellor yourself even

So how about having a chat with her about ways you can get along better?

You could say 'When you are cross and frustrated with me, you shout at me for a long time. I don't like it, it upsets me.'

She may not realise how you feel when that happens.
She may find it hard to believe you don't know how she feels. She's telling you (loudly at great length!) but you are not telling her how you feel.

It's really worth reevaluating all your interactions. You each probably assume things about the other, which simply aren't the case.

My first indication I was getting it all wrong with DS, was his going really quiet after I threatened to ground him for misbehaving. He actually thought I was going to bury him alive. Can you imagine how scary that must have fe,t for him?

When I realised the huge gulf in communication we were wrestling with, and reset my expectations, things became much easier.

Try this -
Assume the other person is doing their best and has the best intentions. Look at what happened again. What could they have meant?

Over time you can help her learn more effective ways to communicate, but only if you start from a no blame, 'let's seek mutual understanding' approach.

By the way, is it possible you are also ND, but better at masking? It's possible that why you find her so frustrating. My flexibility makes it easier for me to cope with ND family members. Some more rigid family members clash terribly. Obviously they are always right, even when they disagree!

@nomorequinoa me too, with mine. I'm definitely not the only autist in my family group, but I'm the only one with a diagnosis. I'd have done anything to have a decent, fair, respectful, loving and equal relationship with my sibling. But it just doesn't work that way. And my family is small and super fractured. Makes me really sad. And my dad has flat out denied there's even a possibility he's autistic. Ha, like fuck he's NT. He's the most autistic of us.

I have trauma, mental health issues, a quick to turn grumpy disposition as a result of overwhelm, burnout, chronic pain and fatigue, I'm an ass. But not all the time and usually not if I haven't been taken for granted/ used/ overloaded by thoughtless family/ forgotten about or whatever.

But I know my autism and ADHD are not excuses for me being shitty sometimes. Reasons, contributing factors but not excuses. Never excuses. Accountability is so important.

Perhaps you could go back and read through all my posts, particularly those where I talk at some length about wanting to meet her half way.

My eldest DD was diagnosed at 11, about six months ago.
She is, although less so now as we handle her better, quite often horrible to us and her sister (9 yo).

We have coined the phrase her ASD 'is a reason, but not an excuse'. So she can't just refuse to do things or be vile to her sister and while we moderate her triggers, sometimes she just needs to be told 'that is not nice and it hurt my feelings'.

It is hard but everyone is happier in our house and my eldest DD feels loved and my youngest is protected somewhat

OP, you’re caring to think about boosting your relationship with your sister despite years of difficulty.

What’s she doing to improve your relationship?

Cuts both ways, family feeling.

OP I am in a rush so have read all your replies, but not the entire thread. Just wanted to say that my STBXH found out he was on the spectrum and saw it as a thing that explained his past, but that was it. There was zero inclination to try and meet me or the kids 10% of the way (for him, 90% for us). Zero desire to see a psychologist to even help him understand how I or the kids think, never mind help him in any other way. His theory of mind would appear to be low and basically because he doesn't have a problem with something, it's impossible to imagine anybody else could.

There are other people who discover later in life they are on the spectrum and use it as a way to help them understand the parts of the world that were confusing.

The first scenario of my STBX is why there's a world of difference between being diagnosed as a child/young person and and adult. For some people, by the time they're older, it can be too late to digest the information that there even are other views, never mind what they are. As a younger person the fact of having the diagnosis in and of itself can assist in that.

Ultimately, if someone isn't good for your MH and they're ok with that, then you have to take steps to protect yourself. It's incredibly sad, but sometimes the way it goes. And that's not anti-ASD, because I'd say the same to someone with the diagnosis who felt people without the diagnosis were hurting their MH.

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.

Sorry op just got in. Yes but I think they would need to understand autism and get on board with how it feels. It's not as simple as learning a set of rules because there are so many and it's not easy to transfer them all.

Excellent post.

You also have an underlying attitude through your post that you don't really believe her behaviour is down to autism, that she may have only got a diagnosis because she threw money at it, that she's possibly lying about having been anxious and depressed or having been bullied.

Just wanted to echo this thought. I have been diagnosed recently, aged 50. Posts like yours are the reason I haven't told my family yet. I would be devastated to be judged and doubted like this.

When you're forced to make your way in a NT world that doesn't really work for you, it's really, really hard. Getting a diagnosis can help you move from feeling like shit about all the things you get wrong, to actually appreciating everything you have achieved in spite of your disability.

I suggest you sit down with her and ask her what it's been like, what she has found difficult, how she feels. And really listen and try to understand, try to imagine what it might be like for her. Ask her how you can make life easier for her, what's the best way of communicating. And ask if you can help her figure out how to manage some of her problematic behaviours, by giving her a non-judgmental NT perspective. Life in our household is so much smoother since I was diagnosed because DH and I both understand better and work around my autism more successfully.

She may well never have felt that anyone is on her side. You could make a huge difference to her quality of life if you can put aside your judginess and scepticism and actually try to understand.

I took assertiveness training courses in the 90s and I learned to do all that and used those feedback techniques to try and help our communication but it has only ever ended up in further hurt and anger (hers).

And no, I'm not ND. I don't tick any of the boxes. Various other people in my life — ex-partners (including one who was an Ed Psych) have called me out on many things but never suggested I'm ND.

You also have an underlying attitude through your post that you don't really believe her behaviour is down to autism, that she may have only got a diagnosis because she threw money at it, that she's possibly lying about having been anxious and depressed or having been bullied.

No, I don't. Someone else went on about buying a diagnosis, not me — and none of that is true. I don't doubt anything she says. It explains a lot. And when I said I had no idea she'd suffered all her life from anxiety and depression it was with no implication other than than I hadn't known. My sister has gone through life at full tilt; she's trained for three different professions, including nursing and teaching and was successful in them. She was a very active, involved mother. She lived with my mum for 2-3 years after divorcing and my mum, to whom I was close, never mentioned experiencing my sister as anxious or depressed.

Thanks to everyone who's offered insight. I'm going to bow out now.