Adult sister diagnosed with autism, mother wants me to get tested

[SunnyWithAMeatball]

My 35 year old sister was diagnosed with autism a few months ago. It came as a shock to the family, she has very mild autism and no one had ever really noticed it. Our mother will not shut up about it being genetic and telling me to get tested too.
I have suspected I have autism since I was a teenager but I have never mentioned it to anyone as in my eyes it's obvious and doesn't take much to join the dots but also because I am capable of living a good life and I don't see how getting a diagnosis will change or improve my life in any way.

I struggle with communication so have never expressed any of this to my family and I've just been trying to fob my mother off regarding getting tested but she is not letting it go. Is getting a diagnosis in life actually worth it?

Yes, getting a diagnosis is totally worth it.

The fact that you struggle with communication (and to talk about this very issue with your family) perhaps demonstrates that it affects your life.

A diagnosis can help you understand yourself and so much more.

I managed (sort of) in my 20s and 30s, struggled in my 40s, but by time menopause hit at 50 I wasn't coping at all (menopause amplifies Autism massively)

I was diagnosed at 51.

No such thing as mild autism. But to answer your question yes a late in life diagnosis is validating and helpful. Also did you mean to post in mental health?

I would think about what difference a diagnosis might make - will you get any extra support (at work, or via your GP)? Will it help you understand yourself better?

Sometimes adult diagnosis can be incredibly helpful in making people aware of what's causing some of their difficulties, and it can be a relief to be able to drop the mask a bit. Others just find it an unnecessary label. Neither of these is wrong, you should do what will be most helpful to you.

I didn't realise that menopause affected autism. Would explain something about my mother though. Possibly worth looking in to that and thinking about a diagnosis somewhere down the line.

How is a diagnosis validating and helpful? Sorry if I am being obtuse but I have long made peace with being who I am and I am very happy with myself so can't really see what validation I need. I could maybe see it being helpful in terms of asking for reasonable adjustments at work but I don't struggle in my job as I am numbers based and have minimal social interaction so even with a diagnosis I wouldn't be requesting adjustments.

I think this is it. In my mind, I already know what is causing difficulties and I just get on with my life with this in the background and never give it much thought. I have built a life that plays to my strengths and don't need to understand myself or do anything to make my life easier.

For myself I always knew I was a bit different to other kids and then adults but I never understood why. I was also incorrectly diagnosed with a mental health condition I don’t have. So to have an explanation as to why I am they way I am and I am not just weird and even to know that yes I am different to my neurotypical peers was validating for me.
in terms of being helpful accommodations at various places due to my disability.

So what works for you, not for your mother (or anyone else).

If you don't need or want to investigate it, don't. Just because it's right for other people doesn't mean it's right for you.

I would really question what starting the process of getting a diagnosis would achieve in this case. As others have said, some find it a liberating thing to be diagnosed, others find it an unnecessary label. Ask yourself… what would it be for, and is it worth it? Just because you could, doesn’t always mean you should.

I'm in my 50s and planning to get assessed. I think it will be helpful to me.

This doesn't mean it would necessarily be helpful to you. You have the right to make up your mind about your own situation. It sounds unhelpful that your mum is pressuring you.

Incidentally, is your mum planning to get assessed herself? It can be genetic, after all...

Agree. I also didn't notice OP had put it under mental health.

OP, Autism isn't a mental health condition. Maybe have a look / post in Neurodivergent Mumsnetters topic, the question "is it worth a diagnosis" has been asked and answered a lot there previously.

IME most people fall into two categories: wanting to explore further, or not. Just near in mind that this viewpoint can change as you age or if things change or become more challenging in life.

I think it's a personal choice. I have two diagnosed siblings. I could get diagnosed, but there is nothing in it for me. There is stuff that could count against me though - let's say I wanted to go and live in Australia or whatever - I think they are pissed if you have autism. Some insurers will not like it either.

I don't need any validation or adjustments because I prefer to keep away from people. If I have to interact with them, I can and I will. But I don't really want to and I certainly don't enjoy it.

Probably menopause has amplified it for me as well. I feel much happier and more confident just staying away from people, rather than feeling deficient.

What does your mum think the test is anyway? It's not like there is a scan. It's behavioural/developmental observations only.

I didn't tell lies when I was younger, but now I see that they're necessary. I'd be tempted to tell your mum that you asked the GP about diagnosis and they agreed that it wasn't necessary for you personally.

If you have a formal diagnosis and let your company know, then you will be protected from disability discrimination. I know things are good now, but a new manager or rationalisation process might leave you at risk of losing your job. This might be helpful if your social skills are sufficiently different that someone in authority might feel threatened.

It's personal choice but I was diagnosed with autism in my 50s and found it really helpful.

During the long wait for the assessment, autism became my special interest. I was pretty obsessed and read loads of books, especially about autism in women.

I could look at past behaviours, situations I had found stressful or arguments I had got into and every time, there was an aspect of autism that explained it.

I'm open with colleagues and friends and feel that I don't have to mask so much eg if I never go into the staffroom, colleagues know I'm just peopled out and need to have lunch on my own at my desk.

One year, we had a "fun" team building activity in the afternoon of a September INSET. It was too loud for me and because I had had my diagnosis, I was comfortable in asking the Head if I could go back to class instead. She was fine about it and I had a much more enjoyable time pottering around, tidying the book corner etc.

There's rarely any support after an adult diagnosis but I found an explanation of why I sometimes felt different or why I found some things difficult to be really reassuring.

I’d start by telling your mother that it’s none of her business, and to button it.

Then you can think about whether it’s something you want or not.

Good point. I'd forgotten but the time I decided to pursue a diagnosis co-incided with having a rough patch at work.

I remember thinking that a diagnosis would give me some job protection if I ever needed it.

Is it worth considering why your mum is so keen for a diagnosis? Did she find parenting hard? Did she feel like she was doing a worse job than others when in fact she wasn't comparing similar children? And would she find it validating of her experience?

That's not a reason to do it necessarily

I wish my sister would get diagnosed.

I found it helpful in understanding why I am like I am . I'm a lot kinder to myself and make more effort to not put too much pressure on myself