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Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently or expert advice, please see our domestic violence webguide and/or relationships webguide. Many Mumsnetters experiencing domestic abuse have found this thread helpful: Listen up, everybody

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

96 replies

nomorequinoa · 24/06/2022 11:35

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?

OP posts:
pixie5121 · 25/06/2022 10:14

Oblomov22 · 25/06/2022 07:34

People can be ASD and open and willing to work on issues. Or closed minded and use it as an excuse. And also just generally nasty. Using as an excuse doesn't sit well with me, and is insulting to those who have ASD and don't.

But again, this is seated in the NT belief that the NT way is the 'right way'. It isn't. It's just a different way.

Things like rudeness and bluntness are extremely subjective. What is considered rude or blunt varies enormously from culture to culture. What most NTs see as being diplomatic and polite, I often see as insincere and cowardly. Neither view is 'right' or 'wrong'. It's simply a different way of processing the world. The thing is that NTs seem to expect us to do ALL of the work. ALL of it. Most of us are masking constantly, and then when the mask slips, we receive anger and hatred for it. Nobody praises us for successfully masking the vast majority of the time, do they?

There's a lot of NT talk of 'meeting in the middle', but what are they actually doing to try to understand and help? Because it looks to me like genuine attempts from autistic people to help NTs understand are almost always met with a dismissive attitude and excuses for not making the effort.

I truly wish there were a way to let NTs spend a day as one of us and experience how fucking draining it is. To never be able to just naturally answer a question. To have to overthink constantly, plan what you're going to say. Be aware of your facial expression and make sure you're making your face do what the other person expects to see. It's fucking exhausting making 100% of the effort so the other person feels comfortable. And then the odd time you drop the ball, you're suddenly an arsehole and a terrible person.

picklemewalnuts · 25/06/2022 10:27

Yep, I'm talking about 'Sorry I shouldn't have shouted'.

Not a grovelling apology for being overwhelmed.

AlternativelyWired · 25/06/2022 10:32

@pixie5121 thank you for all your posts on this thread. Posts from NTs here highlight that many think we should just learn to rewire our brains to avoid upsetting people and that we have full control over our autism. Last weekend I was told to control my autism. The person couldn't understand how offensive it is to suggest a disability can be controlled. My life until I went NC with a lot of my family was made hell by siblings telling me to change who I was if I wanted to be accepted. Fuck you was my response followed by depression and anxiety that I wasn't acceptable. Bastards.

Curioushorse · 25/06/2022 10:32

My SIL is going through the diagnosis at the moment. We're all pretty sure (her included), that it will be confirmed that she has ASD. She is also hugely relieved.

In many ways, it does provide an explanation for her awful behaviours. Moving forward, it will be easier for us to all make adjustments so that things are easier for her, and hopefully it'll all be more positive.

Unfortunately, she's just been awful. Every time she hasn't wanted to see us, she's made it very obvious she doesn't want to see us (which is most of the time). She has growled at me, shouted at me, and showed a level of vitriol towards my children that means I don't consider her to be safe around them. Her diagnosis doesn't change that. During the 'growling' incident, it's because plans had changed as a consequence of rain. I merely greeted her. With one of the shouting incidents, I suspect she was mid 'meltdown', and I said, 'how are you? How's work?' Her response was like nothing I've ever experienced from an adult.

I will try and be sympathetic- but I won't be leaving her alone with my children. And ASD or not, I don't exactly want to sit down and have a relaxing coffee with somebody who's growled at me.

picklemewalnuts · 25/06/2022 10:34

And I totally disagree NT's are asking you to do ALL the work. You are as unaware of where they are compromising, as they are you.

The wider world may not be compromising, I'd agree with that.
People with personal relationships almost certainly are.

All relationships compromise. We don't just fall in with people who match us perfectly. We compromise. Some relationships require bigger compromises than others. Everyone decides how much compromising they are prepared to do. I'm blessed in that while the compromising was all on my side for the first couple of decades, the last ten years he's mellowed hugely and we've begun to meet a bit more in the middle. I think seeing his kids also have needs that aren't the same as his, has helped him realise that when we disagree it's not because I'm just wrong.

We've probably got another 20 years together now, where we can disagree without me being wrong. It's great!

DefiniteTortoise · 25/06/2022 12:09

pixie5121 · 25/06/2022 10:05

I used to do that and it led to several abusive relationships and being taken advantage of by people. Being autistic doesn't mean you're automatically wrong or unreasonable. I find with the NDs I know, we are all much more vulnerable to stuff like bullying and abuse than the average NT, because we tend to assume the best of people and their intentions.

This is a fair point. I have found myself in situations with unscrupulous people more than once as a result. Perhaps I should clarify that I tend to assume I'm BU as a starting point with my friends and family, but am rather more suspicious now of people I don't know so well.

pixie5121 · 25/06/2022 12:18

Curioushorse · 25/06/2022 10:32

My SIL is going through the diagnosis at the moment. We're all pretty sure (her included), that it will be confirmed that she has ASD. She is also hugely relieved.

In many ways, it does provide an explanation for her awful behaviours. Moving forward, it will be easier for us to all make adjustments so that things are easier for her, and hopefully it'll all be more positive.

Unfortunately, she's just been awful. Every time she hasn't wanted to see us, she's made it very obvious she doesn't want to see us (which is most of the time). She has growled at me, shouted at me, and showed a level of vitriol towards my children that means I don't consider her to be safe around them. Her diagnosis doesn't change that. During the 'growling' incident, it's because plans had changed as a consequence of rain. I merely greeted her. With one of the shouting incidents, I suspect she was mid 'meltdown', and I said, 'how are you? How's work?' Her response was like nothing I've ever experienced from an adult.

I will try and be sympathetic- but I won't be leaving her alone with my children. And ASD or not, I don't exactly want to sit down and have a relaxing coffee with somebody who's growled at me.

Why on earth would you think it was acceptable to make pointless small talk with an autistic person in the middle of a meltdown?!

This is just ignorance. You're literally expecting someone in deep distress having a medical episode to interact with you politely and then holding a grudge when they can't. Yes, can't. Not 'doesn't want to' - can't. I'm not surprised she doesn't want to see you. You purposely distress her instead of leaving her alone and then blame her for it.

I just don't interact with most NTs anymore because of shit like this.

nomorequinoa · 25/06/2022 12:43

CraftyYankee, thank you for your understanding. I'm open to trying to find a way to improve our relationship if that's possible. It's very early days for us both. I don't know how much reflection she's doing about it, but I've been doing a lot.

TiridfalPumpkin: from how you describe her, she seems completely unheard and un-empathised-with by the family. ‘Angry indignant flare ups over minor issues’ is a sign of autistic stress, not being an arsehole. Nobody having noticed her long-term anxiety and depression, and that her diagnosis has come so late, makes it seem that you have written her off as difficult
This is your projection. We had a good, largely uneventful childhood in a stable, pretty easygoing home with parents who cared about us and looked after us. I was the oldest and I was thought to be the anxious one because I was shy and bit my nails. My DS didn't and showed none of the signs of anxiety that I see now in young people. No hiding away, no tears, no school refusal or apparent struggling to participate. Did well at school even though she wasn't interested academically. She was sporty and on all the sports teams. I was the placid older one, my DS was understood to be the fiery one with the temper. I was compliant, she was the rebel: classic older sibling/ younger sibling roles. I had a gloomy, spotty, alienated adolescence listening to Leonard Cohen and David Bowie, then went on to A levels and university. My sister was an attractive, non-spotty teen and ran off with a boyfriend at the age of 16. She came back determined to be a nurse, applied to nursing school and whoosh, she was gone again. Nobody talked about autism in the 60s and 70s. It wasn't a thing. So please, don't dump that that 'cruel family failing to recognise her distress' number on me.

As an adult, yes, she was the 'difficult' one in the family because that's how we experienced her. In the last 15 years as knowledge of and discussion of ND expanded, I did occasionally wonder if DS had Borderline Personality Disorder and actually gave her a book on ND and suggested it might be helpful. She read it, then told me at length and in no uncertain terms that it didn't apply to her and what a scummy, vile person I was for suggesting it did. My guess is that others who've been in a similar position will know the situation will understand.

Anyway, thank you to everyone who posted with empathy and useful advice. I will talk to DS about getting further support from a specialist therapist. I really am now out of here, mainly out of a sense of self-protection, and wish everyone a happy weekend.

OP posts:
pixie5121 · 25/06/2022 12:53

OP's posts are basically a study in NT ignorance about autism.

No, the sister couldn't possible have been flaring up because of the stress caused by masking all the time, oh no. They had a nice childhood, you see, so what was the silly girl so upset about?

No, the sister couldn't possibly have been struggling with school - she seemed happy to OP and that's that! And she was sporty too! That means she must have been happy because you can't be good at hockey and be having a hard time!

The sister happened to be attractive, non-spotty and had a boyfriend, so she must have been having a much easier time than poor old OP...just what is she so upset about! Running off with a boyfriend at 16 isn't a red flag at all...oh no.

No, the sister wasn't at all reasonable to be upset about OP suggesting she had a stigmatised condition (BPD) autistics are often misdiagnosed with. She should have been delighted by OP's knowledge and expertise on neurodiversity and mental health!

It's all so incredibly cliched in its lack of empathy and self centredness that I'd almost wonder if OP were a troll if I didn't know better. If I didn't know this is how many NTs think.

The poor, poor sister.

oldageprancer · 25/06/2022 13:14

Good luck with it all, op.

Hornbostel · 25/06/2022 13:15

Nobody talked about autism in the 60s and 70s. It wasn't a thing.

It really was.

CraftyYankee · 25/06/2022 14:00

Hornbostel · 25/06/2022 13:15

Nobody talked about autism in the 60s and 70s. It wasn't a thing.

It really was.

Far less so for girls though, and very much depending on where you were located.

AmaryllisNightAndDay · 25/06/2022 14:01

It really was.

It really wasn't. Of course all kinds of autism existed but only classic Kanner's autism was known about in the 1960s and 1970s. Knowledge about the higher functioning variants didn't start to become widespread until the late 1980s/ early 1990s.

ofwarren · 25/06/2022 14:07

Curioushorse · 25/06/2022 10:32

My SIL is going through the diagnosis at the moment. We're all pretty sure (her included), that it will be confirmed that she has ASD. She is also hugely relieved.

In many ways, it does provide an explanation for her awful behaviours. Moving forward, it will be easier for us to all make adjustments so that things are easier for her, and hopefully it'll all be more positive.

Unfortunately, she's just been awful. Every time she hasn't wanted to see us, she's made it very obvious she doesn't want to see us (which is most of the time). She has growled at me, shouted at me, and showed a level of vitriol towards my children that means I don't consider her to be safe around them. Her diagnosis doesn't change that. During the 'growling' incident, it's because plans had changed as a consequence of rain. I merely greeted her. With one of the shouting incidents, I suspect she was mid 'meltdown', and I said, 'how are you? How's work?' Her response was like nothing I've ever experienced from an adult.

I will try and be sympathetic- but I won't be leaving her alone with my children. And ASD or not, I don't exactly want to sit down and have a relaxing coffee with somebody who's growled at me.

Jesus fucking christ
And NTs say autistics don't have empathy??

I hope she goes no contact with you

DefiniteTortoise · 25/06/2022 15:12

ofwarren · 25/06/2022 14:07

Jesus fucking christ
And NTs say autistics don't have empathy??

I hope she goes no contact with you

As I've said, I'm autistic. If I encounter another person who growls at me and behaves angrily/unpredictably, I will not be especially keen to interact with them again. I will sympathise with their condition, yes, but it would be unreasonable to expect me to actively want to spend time with them again. Similarly for myself, if I have a meltdown at someone then it is completely reasonable that they'd want to avoid me. I totally get that and in fact respect their decision. They are entitled to feel how they feel, just like I am.

TigerRag · 25/06/2022 15:20

AmaryllisNightAndDay · 25/06/2022 14:01

It really was.

It really wasn't. Of course all kinds of autism existed but only classic Kanner's autism was known about in the 1960s and 1970s. Knowledge about the higher functioning variants didn't start to become widespread until the late 1980s/ early 1990s.

It was a thing. But they were just diagnosed with other things. Doesn't make it any less real.

LifeInsideMyhead · 25/06/2022 15:30

Wow so sad at some of the responses on here.

Yes changes of plan are hugely distressing so of course thats a time a NT needs to support and not expect normal functioning.

I really feel for Ops sister who has been struggling all this time and a famiky who dont get it/arent supportive of autism.

I mark some distance learning about autism and have an autistic daughter. I natively thought most people upon learning a family member is autistic would read up on it and try to support them.

People saying they dont find it acceptable that autistic people struggle with change/talk directly... do you also struggle with wheelchair users needing ramps?

The amount of unkindness that seems to be acceptable towarda autistics is so so sad.

TirisfalPumpkin · 25/06/2022 18:56

This is your projection. [...] My DS didn't and showed none of the signs of anxiety that I see now in young people.

Deflect, miss the point and dismiss anything even slightly critical as 'projection', right 🙄

OP has flounced but just for anyone reading along - your autistic relative does not display anxiety/depression like you do. Chances are, you will see nothing untoward at all - indeed they may seem chatty, successful and happy, except for occasional explosions of intense distress. Exactly like what OP has described. The 'whoosh, off again' life pattern is also absolutely classic female autism, and the 'freaking out unreasonably at an uncontrollable change of plan' is also very common.

OMG. I'm trying to provide useful input of a condition with which I'm intimately familiar but the 'I chucked a textbook about a personality disorder she doesn't have at her and expected her to respond well' ... I mean, I don't even know what to say.

OP's posts are basically a study in NT ignorance about autism.

Aren't they, though. I mean, ignorance is OK. Everyone starts in a state of ignorance. It's the asking for input then rejecting everything that doesn't 100% validate OP's prejudices that is a head-scratcher.

I did want to say, there's a lot of apologism in the autism community for awful behaviour. There's a thread on this site where women describe how their autistic husbands emotionally abuse them. There are insufferable idiots all over tiktok and other social media demanding to control everyone around them with endless and bizarre 'adjustments' (and half of them are self diagnosed anyway). This gets handwaved as 'the condition' and IMO this isn't right. Condition or not, it's an adult's responsibility, as far as they have capacity, to manage their negative impact on others, whatever its cause.

This isn't that situation, it's a woman grappling with a late-in-life diagnosis and getting zero support and empathy from her family. I repeat my earlier suggestion that she spends some quality time with an autism-informed therapist.

OneFrenchEgg · 26/06/2022 00:15

Autism in the 60s and 70s just like ADHD wasn't recognised unless classic, people were either in a special school or masking/surviving/being traumatised in a mainstream school with no understanding ime.

www.autism.org.uk/advice-and-guidance/what-is-autism/the-history-of-autism

flashbac · 26/06/2022 08:04

"I did want to say, there's a lot of apologism in the autism community for awful behaviour. There's a thread on this site where women describe how their autistic husbands emotionally abuse them. There are insufferable idiots all over tiktok and other social media demanding to control everyone around them with endless and bizarre 'adjustments' (and half of them are self diagnosed anyway). This gets handwaved as 'the condition' and IMO this isn't right. Condition or not, it's an adult's responsibility, as far as they have capacity, to manage their negative impact on others, whatever its cause."

Agree.

AmaryllisNightAndDay · 26/06/2022 08:07

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.

That's probably quite a common experience for people with undiagnosed ASCs. If you can't judge how other people will react to your own behaviour then it comes as a real shock. And being unable to predict people's reactions can make you either a victim or a bully, sometimes both at the same time.

The angry, indignant flare-ups over minor issues

What feels like a "minor issue" to an NT person really can cause an intense reaction in someone with autism.

Her loudness (apparently, I didn't know this).

Oh yes, especially in children that's a wellknown sign.

she has never mentioned it before)

Being unable to identify and name your own emotions is another. Some of that is internal and some of that is because other people don't feel the same way in these situations as you do, or show emotions the same way you do, so they don't use the same words as you do - children hear "nothing's wrong" or "fussing over nothing" or "stop screaming" instead of "oh you are hurt" or "that is scary" or "oooh that feels bad". You never learn to relate the words to your own feelings about things.

As a pp said, knowing the diagnosis is only a starting point. The diagnosis can give you pointers - as a pp said, talking to someone mid meltdown and expecting a social response is likely to go badly, most people need to be left in peace to self calm. If you know that then your relationship with DSis will probably go more calmly and be less worrying for you. But individuals vary, and there will be trial and error. Coffee with your sister is not lilely to be relaxing at first! But hopefully you'll both get there.

One of the things I didn't realise about autism, and the anxiety that goes with it at all ages, is that anxiety doesn't just manifest as hiding away or tears. Tears, shyness, nailbiting, withdrawal are what "internalisers" do with anxiety. Anxiety
can also manifest as controlling behaviour (trying to keep the world and everything in it "right" and predictable and safe) and as outbursts and aggression (this what "externalisers" do)

Anxiety is well known known as fuel for meltdowns, just as much as sensory issues and overstimulation; and even minor changes of plans can be a huge source of anxiety and cognitive disruption. She isn't capable of going with the flow, and all the mental plans she unconsciously made for coping with the day and enjoying it - blown to bits! Social situations - even simple ones like a coffee with her sister - can be a huge source of anxiety for someone with an ASCs because people are unpredictable and dangerous, people may distress her, she may upset people. Nobody wants to have a meltdown (though it can bring a kind of relief)

I'm surprised that you ever expected your DSis to react well to the book you gave her. Who would? So it also ocurs to me that having been brought up with your DSis, you might benefit from a little therapy yourself, so as to understand your relationship with her better and help you set suitable boundaries as adults now.

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