Should I tell my sister I think she has autism?

[Nicewarmfeet]

Or should I just not say anything? This is something I think about a lot and spending loads of time with the family for Xmas has made me think of it again today. I just think so many things she struggles with fit the ASD description for women. Maybe if she knew she'd be less angry all the time? Maybe as a family we'd find it easier to handle her meltdowns?

She is 38 and lives at home with my parents paying minimal rent. She has sensory issues that send her into a rage on a daily basis. If we do things like - leave ads on the TV unmuted, clink our cutlery too loud on plates or chew too loudly she flies off the handle and storms off. You never know what will set her off. She finds any kind of lie a personal insult (even accidental ones) e.g. if she asks 'do we have milk?' and you say 'yes' because you think there is some but actually you've run out she gets very upset/ angry. She's obsessive with her interests which currently are gardening and various films. She's obsessed with germs and has to spray down the kitchen fully before using it. If you interrupt this while she's in there again she gets very angry. There's so many other things but these are what are in my head.

We all love her. She can be lovely and generous and fun but she's such hard work. You're always on eggshells with her.

My parents get shouted at everyday in their own house. She's making no effort to move out and they'd never throw her out but I worry about her living with them as they get older.

Has anyone else had this situation? Has a diagnosis helped with the rage? If you have had someone you know get diagnosed as an adult how did they know to do it? Who suggested it to them? Did it help them? Or if you've had a diagnosis yourself I'd be interested to hear. Any advice would be appreciated.

I dont think its right that the suggestion comes from a sibling. What do your parents think? How old is she?

It's in the OP...

Maybe have a chat with your parents and see if they are on the same page about it. It depends how you mention it to her but it could be beneficial to see if your parents agree with your suspected diagnosis first.

Does she work? Sorry if you've already said but I couldn't see it in the op. If you do, you need to tread very carefully. Maybe you could bring up something you'd read or seen on TV and allude to traits either in yourself or other family members (you'd have to do this in a very light and offhand manner though, or she'd see straight through you). Maybe you could start with suggesting misophonia and sensory difficulties as a way in? I think this is often linked to autism so she might go on to make the connection herself.

She's 38. My mum agrees with me but thinks we shouldn't say anything and she'd be hurt if we even suggested it. I think she's probably right deep down. I just wondered if she were on board with finding out if she could get some counselling maybe? Maybe she'd feel less like we're all picking on her / trying to annoy her when we're really not.

An autism diagnosis doesn't mean she'll get help. Most of us are diagnosed and left to get on with it.

That said maybe she could move into supported living if she got a diagnosis so it wouldn't be a bad thing.

Yes she works part time in a shop. She's very organised and sometimes stands in for the manger so she does function well. She often falls out with people there if she feels they aren't being careful enough about germs etc though. If she thinks someone gave her a cold dear me! They get the silent treatment at best.

Maybe yes a subtle approach is the way to go. She's not very self aware though I'm not sure she'd make the connection. She just honestly thinks the problem is everyone else not her.

Thank you for your reply. Can you share what led you to a diagnosis (you're reply made it sound like you've had one). Did it help you / those around you to know the condition was there? What kind of help would you find helpful?

is there a chance she might have CPTSD or something? I wouldn't necessarily jump in to any autism diagnosis, it could be linked to some trauma or something instead. Maybe some therapy could help her. Maybe suggesting therapy might be easier than suggesting an autism test. A therapist may steer her towards assessment if they felt it appropriate but it could just be that she had some trauma and it's not necessarily related to being autistic or something.

In my opinion it doesn’t matter if she is autistic or not what matters is it’s not an excuse to fly into a rage and control those around you and she needs to know that it is unacceptable. She’s still an adult woman who can clearly function enough to work so she can sort this out, possibly with help.
A diagnosis will not change anything. It doesn’t suddenly sort everything out. It’s not a magic wand. It might give you and her a better understanding but that about it.

That's interesting what is CPTSD? Is that something that triggers rage? Yes maybe I'm completely wrong about ASD I mean I'm certainly no expert.

I guess the question I should have asked is how to I approach my sister about her meltdowns and try and get her to get help? I just think if I say something she'll think it's me picking on her / being down on her. I just want to help her and I will admit by extension the rest of us not have to work round her rage all the time.

I have autism and so does my son.

I wasn’t diagnosed until I was late 30s - I went private to have an assessment because of my son, he was 2.5 when diagnosed and I recognised so much of it in myself. He’s 10 now and attends a specialist school. I don’t really like the whole high / low functioning autism stuff but for want of a better way of describing things - I am more high functioning than him. I struggled at school socially and I don’t have any friends now as I really find people difficult. And relationships are difficult for me - although I’m married now, I suspect dh also has autism! I have struggled to maintain jobs because I find the pressure of other people hard but I did well at school / college - totally straight A student.

For my son getting a diagnosis was really important as he needed it to access an autism specialist school and it also helped with his ehcp (although a diagnosis isn’t essential for that) and I think he might find it beneficial for adult support as he gets older.

It hasn’t really done much for me though…. I don’t work, I’m actually disabled with physical disabilities now and on the highest rates of PIP long term so the autism thing makes no difference (was awarded before my diagnosis). I don’t need any support or help with regards to my autism. So perhaps it’s helped me to understand myself more but that’s all really.

However, other people might find it useful to help claim benefits like PIP etc - again this doesn’t necessarily have to be linked to a diagnosis but if you have one they tend to be more sympathetic.

It’s quite common for adults with autism to be fairly capable in work if the work is well structured and routine as generally people with autism like things to be predictable and the same. Work can often provide that - although in my case I find work absolutely awful. Many children with autism actually like school (if it’s the right school) for similar reasons.

I think your Mum should raise it with your sister but ultimately it may not make any difference at all. There isn’t a lot of support out there for adults with autism.

Is she unable to live independently? Surely your parents would prefer she live elsewhere?

I also wonder if the whole Christmas period has made your sister on edge, I know it does to me and my son. Too many things going on, too much noise, too many people in our space etc. I am a bit like your sister in that I like and need things to be a certain way, I have a very strict routine even down to having the same breakfast in the same way and then a cup of coffee in the same cup etc. I like to put washing on at the same time, go out for a walk at the same time etc etc. You get the idea. Anything that changes that for me makes me incredibly stressed.

Can't lie here, if you had ousted this about your brother I would tell you he was a cunt.

Being angry isn't being autistic.

Also, just to clarify, the diagnostic criteria are the same for both male and female. There is no separate 'ASD for women'.

I'm not saying your sister isn't autistic but based on what you have posted, I wouldn't be suggesting it to her.

To be a bit blunt, why is she living at home at 38? She sounds stressed and claustrophobic due to that, don’t jump straight to autism. Do you work in a field that deals with autism?

That's very interesting. She seems to love Christmas she put up the tree and wraps presents beautifully. On the day itself though she barely left her room. Including screaming at us all 'I can't be around people eating!' and storming upstairs as we were serving Xmas dinner. Is there anything that helps avoid that sort of thing? We tried really hard. She set her place on the breakfast bar away from the table so she'd be away from chewing sounds. No one touched her cutlery/ plate she got those herself. We let her serve herself first so no one else had been near the food. She still just spoke to us like we were the worst people on the planet. It's so hard.

I was diagnosed at a similar age to your sister. Agree there isn't any help as such, but it has given me a greater sense of self awareness and others some understanding, so I have fewer meltdowns - I recognise when I'm getting wound up and take myself out of that situation, or DH notices my behaviour changing and gently removes me somewhere quieter / less stimulating. I've spent the last 2 days in bed recovering from Christmas and i wasnt able to work today. Pre diagnosis I thought I was a shit human, now I cut myself more slack and so does everyone else. A long way of saying I would pursue a diagnosis because I think it's usually helpful somehow.

she may find it useful to know, or you could read around it and assume she has it, and it may give you an understanding.

Sorry I thought ASD traits presented differently in women and that's why it gets under diagnosed? That's what I meant when I wrote that. Apologies if that was clumsily put.

This thread is interesting thank you for your reply. No I have no knowledge beyond reading on the internet so my amateur diagnosis could well be wrong I just noticed things I thought matched but this thread is showing me it could be any number of issues. Maybe it's not my issue to solve it's just something I wish I could help with.

Is there anything that helps avoid that sort of thing? We tried really hard.

I feel sorry for you. If she has ASD it's no excuse for being repeatedly rude. I'm absolutely no angel and can meltdown and shutdown with the best of them, but I always apologise afterwards or try and remove myself first. This is why your family should try and have that conversation with her. It's not fair on her - she needs to understand that her behaviour isn't okay and a diagnosis could assist with accessing tools that help her understand where her limits are and remove herself before it gets too bad for everyone else. I spent several 10 minute chunks of Xmas day upstairs in my room quietly to calm down a bit so I didn't scream at my relatives or snap at DH, because that's the responsible and kind thing to do.

I thought I had autism but I actually have inattentive ADHD. I’m similar age to your sister and have a recent diagnosis. I now understand myself so much better. The ‘rage’ was affecting my marriage but I couldn’t explain it - I wasn’t angry, which I was being accused of, but now understand that it is ‘emotional disregulation’. DH is much more patient with me and I am learning to regulate.

My diagnosis was through a journey of discovery following my DD being diagnosed with ASD. I don’t know how I would have liked someone else suggesting it though, even a parent or sibling.

What I’m doing for my DD is reading up about ASD and incorporating it in how I parent her. I don’t discuss ASD with her (she’s too young anyway). Perhaps you could learn more about ASD/ADHD and try to see what helps in terms of dealing with your sister. In the milk example, say ‘I don’t know, I’ll have to check’ and then check, rather than saying ‘yes’ when there isn’t. ADDitude online mag is a good resource.

It could be a combination of the change in routine and all the expectations around Christmas. My eldest has autism and is the most sensitive to sounds person I know but in her early twenties will mostly sit for a short meal with us. I assume you have tried having music on in the background. The only other options are for her to eat her food separately or wear headphones.

It doesn't sound especially like CPTSD, based on what has been said (I'm a psychologist). I think you are right OP and does sound like ASD is a possibility.
It's so tricky to bring this up. It would be a brave thing to do. I think the reason a diagnosis can help is that the person can then have a blame-free understanding of why they feel so different to others and find the world so hard to navigate. It can then help with the persons self esteem as they can acknowledge they are fundamentally different instead of being wrong or defective. Or perhaps less angry because they can realise that everyone is not being completely unreasonable, just have a different way of thinking.
If you don't want to raise it directly, maybe you could say you are worried about her because she seems so unhappy and suggest she talks to her GP or a counsellor.

This questionnaire can be helpful. Disclaimer-It's not the definitive diagnostic tool. https://psychology-tools.com/test/autism-spectrum-quotient

If she is autistic, a subtle approach trying to say things Wo saying them isn’t going to work!

I also agree that a diagnosis might not make any difference, in that she will not get any special support for it (or medication, unlike ADHD).
It might help you and your parents to understand her better and see what sort if triggers she has etc…. Depending on her temperament, she might question her behaviour or understand herself better, which could lead to better self regulation.

Fwiw if she isn’t able to live on her own (which I assume is why she is still living with your parents) then I wouldn’t say she is functioning well)