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?

Just fyi these are the bits of your OP that come across that way:

DS has spent serious money and time obtaining a diagnosis

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).

I hope you can find ways to reconnect better with your sister, there is some good advice on this thread.

Yes, you say that, but you don't seem to have considered what that means.

You seem to think that she needs to 'meet you halfway', when in fact she's probably already doing about 80% of that work. Just to exist in the world as an ND person is an enormous effort. It sounds like she's done really well in life. You say she's got a job (full time?), you say she's had kids and been a decent mother...these are massive achievements.

You know how you say she's lovely to be around most of the time but has explosions? That's because she's masking and then has meltdowns when she can't mask anymore. That pleasant, calm, nice person is her making a constant effort to mask. Do you have any idea what that takes out of someone? You don't appreciate and acknowledge that effort - you just get angry with her when she melts down. Can you imagine how disheartening and frustrating and downright miserable that is? To get the ball in the hoop 99 times, and the one time you miss, people get angry with you? That's how it feels.

Your OP is the usual stuff that comes from ignorance about autism. You write about her quite harshly and paint yourself as the victim. The reality is that she's the one with the disability. She's the one who has had to struggle through life. Yes, she might be hard to be around and she might have said horrible things, but you just don't seem to grasp what it must have been like for her, to get to the age she is not even knowing what was up. Your interactions with her are limited. She has to live with her brain 24/7.

Your OP isn't 'my sister has been diagnosed with ASD - how can I support her and understand?' It's basically doubting her diagnosis, worrying she'll use it as an excuse. Do you think that's a supportive or kind way to talk about someone with a disability? I know she's difficult to deal with and she needs to accept that she can't just use ASD as an excuse for being an arsehole, yelling or being mean, but your OP is full of judgement and shaming.

'Meeting her halfway' means accepting the enormous effort she's already making just to be sitting down talking to you. It means accepting that her brain just works differently to yours and you cannot expect from her what you'd expect from an NT person. It means understanding the ways in which she tries to connect to you instead of shutting her down and then wondering why she's hurting and lashing out. It means understanding that going through so much of your adult life as an undiagnosed autistic means an incredible amount of trauma, pain and shame, and being compassionate about that. She will have already been compromising and sacrificing beyond anything you can comprehend.

DS has spent serious money and time obtaining a diagnosis
I said this to make it clear that she has a reliable diagnosis from appropriate professionals, not a quick self-diagnosis.

Her loudness (apparently, I didn't know this).
I did not know that speaking loudly when angry/ annoyed was something associated with ASD. This is what she has told me. Apparently she has been told throughout her life that she's 'loud'.

Her apparently lifelong anxiety and depression (this was all news to me, she has never mentioned it before).
I've already explained this. I had no idea that her behaviour, from childhood onwards, was affected by anxiety or depression.

I could have phrased it better — and you could have read it more generously.

I'm glad you now have a diagnosis and a reason for your sister's behaviour throughout your life. In itself, you may find that helpful in reframing her actions/words/behaviours. You don't have to be particularly involved with her though, and you don't have to sacrifice yourself and your needs.

I've been there. Living through other people's scary meltdowns (without an explanation for them, as well) from childhood is very traumatic and you may well have your own mental health issues because of this. It has affected me into adulthood and for my own mental wellbeing I am very low contact. You are not your sister's support human. Her job problems are not yours to take on (you may well have been trained into a caretaking role from an early age).

I'm glad you now have a diagnosis and a reason for your sister's behaviour throughout your life. In itself, you may find that helpful in reframing her actions/words/behaviours. You don't have to be particularly involved with her though, and you don't have to sacrifice yourself and your needs.

I've been there. Living through other people's scary meltdowns (without an explanation for them, as well) from childhood is very traumatic and you may well have your own mental health issues because of this. It has affected me into adulthood and for my own mental wellbeing I am very low contact. You are not your sister's support human. Her job problems are not yours to take on (you may well have been trained into a caretaking role from an early age).

DH apologised after a meltdown recently. First time ever. 55yrs old.

What do you think about @pixie5121's latest post, OP?

(Leaving aside any feelings you have about autistic people not reading your posts generously enough.)

I know what I thought. It's the kind of one-way traffic I get from my own family. There's never any space for an acknowledgement of how bloody awful it is to be endlessly abused and shouted at, from the tiniest age right through adulthood. It takes its own toll. I'd recommend low contact, personally.

And you think your own behaviour has always been perfect for them and you've never been hurtful? I highly, highly doubt it.

You do realise meltdowns are an involuntary reaction to being overstimulated? It's not a choice. You wouldn't expect an asthmatic to apologise for an asthma attack, would you? Or an epileptic to apologise for a seizure?

I think in 50 years time people are going to look back and be absolutely appalled and horrified at how autistic people were treated.

Yes, op, there won't be much space for any reflection on your sister's part!

I have had therapy to talk a bit about family dynamics. It was helpful, especially in light of the diagnosis, helped to put all the jigsaw pieces together. I can see how it's shaped so much of my own personality, and wider family dynamics, growing up in this regime of violence, blame, self absorption, whilst loving and trying to protect them from themselves and others. In the end, strong boundaries and low contact have been my most helpful way forward. Do her children need your support? Their childhood may have been quite scarring, if they are also now low contact. The diagnosis is probably very helpful for them in their healing process.

So my advice is along the lines of self care. You can wish your sister well without needing to try to solve her problems or make things better. The relentlessness can be very wearing ... for me, this is the word that describes my experience of one of my family members! I could be ground down to dust and they would just keep on ... and on ... and on. You need strong boundaries to survive that intact. I wonder if this thread is quite triggering in parts in that regard? Kick, kick, kick.

Hopefully her diagnosis will lead to helpful experiences for her and enable her to live more happily in the world and the workplace. You can wish her well without needing to be a big part of that journey. My own sister has been much happier in the years since her diagnosis, and I am pleased for her. I leave her to it, for my own self-preservation, but it's good to see her happier. We have developed our own way of interacting well, by phone only, and avoiding trigger points. Do you have ways of interacting that are calmer eg by phone? or text? Or safe topics you can stick to?

Respectfully disagree. And you seem to suggest any behaviour is excusable if an autistic person commits it and we all need to stfu.

Actually the stfu bit is a bit harsh. But really disagree that autism or neurodiversity = get out of jail free card.

My son has ASD and the best way that you and her children can react to this is to see her in a new light. So every conversation where you've taken offence she has probably walked away from perfectly happy that she just expressed what she thought was right at that time and bemused at why people didnt warm to her. All autistic people are different but the common characteristics are I undeniable. Rigid thinking no grey areas. Lack of empathy and socialization. Fixed thought patterns and a seemingly self centred way of looking at things from a NT point of view which to them is natural. My son is such hard work he really is but I love him he is my family so I and everyone around him doesnt take offence to any crap he comes out with. We try to listen and be patient with his fixed thoughts and seemingike he is only interested in what he thinks and does. There is never a how was your day or how are you feeling. It's literally alien to him. We do give him strong boundaries. So no silent sulking if he has really stepped out of line we make it clear he has upset us and then give him time to reflect. He will apologise I sometimes think he just goes through the motions but it's something. He is an adult now and I can see first hand how hard it is to navigate a NT world. So I cut him some slack and show him lots of love and I get back in return next to nothing. But that doesnt mean he doesnt deserve to be loved.

As an autistic person, this ^

Having a diagnosis does help as it gives an explanation or understanding of why things are the way they are. Your sister likely doesn't understand why her behaviour impacts on people. My ds is v young so totally different situation but when issues arrive we work on the environment. So literally if there's a loud noise and he's struggling we remove him from the situation but meanwhile day to day we work gradually on making noise more acceptable to him. If you want to help your sister I'd look for triggers and try to work with her to reduce the impact of the triggers and also look for things that help and encourage her to access things that help her when she's struggling. I'd encourage her to read up on adult autism and do the same myself.

I’m another autistic poster and generally take a fairly critical view to some of what is considered ‘ableist’ on here. Autism is, indeed, not a pass to be awful to people, or immunity from being sacked at work if reasonable adjustments don’t mitigate the impact of your condition.

but, 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 and are focused on the effect she has on you, rather than how her life has been due to something she can’t help, and until very recently, she has had no explanation for.

’prickly’ autistics are a thing, and it’s usually because they’ve had this kind of life experience. Try to imagine: your environment is literally attacking you, your family don’t get it and your colleagues seem to be being deliberately vague, woolly and ineffective when you’ve got a job to do.

I suggest she finds a good autism-informed therapist to help her work through things, and she probably should research what protections she actually has under EA2010 for work. ie she is probably protected if people object to her bluntness and directness, but she needs another strategy than blowing up at people as that isn’t reasonable.

also suggest you distance yourself a bit. It sounds like you really dislike her.

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.

"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."

ineednewshoes explained it better than I did. I agree with her.

I think that whilst a NT might get a diagnosis and think how will this help me to manage my disability, a person with asd could potentially think well this explains how I am. End of. My partner is autistic. Not formally diagnosed but very obviously autistic. For years he didn't acknowledge it. Now he does but it is worse. He has decided he is who he is. Tough shit if you don't like it. He makes less effort to fit in with the way society or family life works. He prioritises himself more. Ultimately you have to decide how much or your sister you can deal with. I have started to do this and to be more selfish myself.

Another one here agreeing with ineednewshoes. My default position is to assume I might be being unreasonable (or be perceived as such), even though I am autistic. This helps to smooth my social relationships a lot I think.

OP I think you've gotten some pile on here from posters who are finding your situation triggering, whether they have autism themselves or have a family member with ASD.

You are brand new to this idea and are struggling to grasp its implications for both you and your sister. You aren't going to magically understand the language, history, ongoing effects and possible paths forward instantly. It's a learning process and I think you sound very open to it.

IMO the best thing you can do is encourage your sister to get specialist treatment with a therapist. At some point maybe you could look into family therapy with her about the dynamics of your relationship. But it's up to her if she wants to work on adapting behaviors or not.

As a ND person it can be exhausting and I find as I get older I care less about making other people comfortable. I'm not trying to be a jerk, but I am who I am and if others want something different, for the most part I don't care to use my energy there. I use most of my energy on adapting for my family, so your sister might be willing to make some effort with you if she understands the situation.

If you do some reading on ASD it will help you manage your relationship with her, as there will be triggers and signs that you will recognize and possibly have a new perspective on how to handle. But only you can decide how much effort the relationship is worth to you. Hopefully she will recognize the real caring you have for her and prioritize it as well.

@pixie5121 apologies are not reserved for deliberate misbehaviour. In fact I wouldn't accept an apology from someone who had chosen to behave badly. An apology is an acknowledgment that something you've done has upset someone else.

If we missed a bus because I had an asthma attack, I'd apologise. If I had an epileptic seizure and came around to find my partner had a bloodied nose from me flailing about, I'd apologise. Damn it, I apologise if I have to walk between him and the TV.

Of course he should apologise if he shouts at us, because he's overwhelmed.

Except that's not what I said, at all is it? I said the exact opposite.

It's weird how NTs tend to perceive autistics as being self centred, because I think expecting someone to apologise for upsetting you during their medical episode is incredibly self centred. If a meltdown is distressing to witness, how do you think it feels to have one? I'm often suicidal for days after mine.

To me, the idea of apologising ties in with the underlying NT belief that meltdowns are something you can choose not to have if you want to.

Sure, apologise for something specific you did during a meltdown. Shouting, saying something hurtful, etc. But apologising for having the meltdown? No.

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.