Effect of diagnosis on long-term friendship

Apologies if I misread your msg. Eitherway, this film is a nice story of support and personal transformation.

Wishing you well

Thank you JT but I don't have Netflix... and it's me who needs supporting, not my friend – I've been supporting her for a long time, as I'm sure she'd agree! and she used to be very supportive to me, but that's rather taken a back seat recently.

You're right, I must avoid the temptation to say I miss the "old her". As far as she's concerned she hasn't changed. I have heard of Temple Grandin – I have been interested in autism for a long long time (B's son is very autistic, almost non-verbal and he's 47 now, and I've been interested all his life!). 

Gosh, that's exactly my experience both for my friend and for me observing her, particularly the "bailing out". I need to nudge her into thinking of others a little bit more. She tends to live inside her head half the time (by her own admission) and sometimes misses what's going on around her.

I recommend this film as a reference for how to support a friend

www.netflix.com/.../81760197

Good morning.

It is great that you have enjoyed a friendship with this autist for 50 years.  You are perhaps one of the (few?) who can "call-her-out" on the level of disregard that she is now demonstrating towards your friendship with her - and therefore, presumably to others as well.  I am sure that this would be an "awkward" conversation to have, but I also believe that you would be doing her a kindness to tell her.

In terms of specifics, I wouldn't tell her that "you miss the person she used to be".....but I would tell her that you have noticed that it is becoming "problematic to you" that she seems less interested in your life and less considerate of your needs.

One quick word about the realities of life.  Whilst we all hope to keep friendships and relationships "going" forever - until death do us part and all that jazz - there can be no doubt that sometimes, it is better for all concerned, to just to call it quits!  See if you can help her (and your friendship to evolve safely into this new paradigm,) but if that fails, don't presume that it was "your fault."

If you want to "prepare".....may I recommend listening to Temple Grandin.  She is an overtly autistic, and slightly bombastic hero to some of us (yes...me.)  She talks about things that MUST be done, even if they are uncomfortable or seem worthless, to ensure that we can survive, or even thrive, in this world - notably in relation to our dealing with other people who don't share our autistic perspectives.

Good luck Volvox.

I'm autistic and manage to be considerate to others, it is possible. I mask fairly seamlessly and it does not cause me distress, just exhaustion, if I am in social situations that are too intense or that last too long. If this happens, I try to 'bail out' and have some alone-time. Unmasking in autistics can have positive effects, but can also be quite negative. This is both to to the autistic person and those who interact with them.

Thank you Martin, that's what I believe… I think. I am not good at "making it plain" and she isn't good at picking up subtleties! I have had periods in life when I suffered panic attacks and dissociative episodes so I do understand the feeling of being overwhelmed, but I always tried to deal with them myself, not affect other people. I need to be braver in explaining to her. It strikes me that "masking", which she's been doing till a few years ago, means moderating her behaviour to fit into society, and perhaps she needs to call on that ability when other people are involved. If you know what I mean!

We have to work it out, because she would be devastated if I ended our friendship after 50 years. 

I do not believe that being autistic is a blanket licence to behave badly. Sometimes, sensory or emotional overwhelm can result in autistic people being unable to control their actions, but the interactions you are having do not appear to fit this sort of situation. You have as much right to be treated with respect as your autistic friend. I would make that plain to them. All friendships should involve a reasonably equal amount of give and take, if one person is giving and the other taking all the time, it is not a friendship.

It’s important to acknowledge that her needs might be different and more intense than yours. Of course that doesn’t mean they’re more important. Nonetheless, without trying to dismiss your concerns and discomfort, sometimes the intensity of a need matters. Being in a situation a neurotypical person would deem uncomfortable can trigger a fight-or-flight-mode for an autistic person. It’s important to keep that in mind. 
I hope you two will work it out but if not, that’s not the end of the world, sometimes we have to accept that a person is not the right company, that doesn’t mean they’re not a good and lovable person, just not the right fit for you personally.

Thank you for your very thoughtful reply Emmalephant. I am indeed very conflicted. I find it very comforting that I'm not alone – you say the situation is not uncommon. I do try and explain to B why her behaviour is difficult for me but either she doesn't understand or more likely it's just a laugh and "oh I know, that's what I'm like" ie she can't take my discomfort/pain seriously. The restaurant example – I do understand that she wants the "best" place for her which is fine but not at the expense of being rude to a waitress (eg moving tables five times!) and embarrassing me. I suspect that she genuinely believes that her needs and feelings take precedence over others because she is autistic. Unfortunately I don't agree.

I feel like you’re very conflicted, which is good. It shows that you care about this friendship and seeking advice probably means that you’re willing to work on it and yourself. The thing is that she probably really can’t help it and I heard a lot of people talking about losing friends after starting the process of unmasking (or “unshielding”, I honestly quite like the term you’re using) since they’ve been a completely different person their entire lives. You’ve already made an extraordinarily brave step by writing this e-mail. I think it would be beneficial for both of you now to get together in person. Talk about the points you’re struggling the most with (choose a limited number of issues to tackle like a top 5, otherwise it will be overwhelming). You tell her why this bothers you while making clear that you’re not upset with her being herself (at least I don’t feel like that’s the issue here). Instead you tell her exactly why you’re sometimes struggling to adapt to her true self and then you could work out shared agreements for when that happens. To what degree are you both able and willing to compromise? The goal here should not be to force your friend back behind the “shield” but to help you to adapt to this change. There’s a good chance that your friend doesn’t even really understand why some of those things you’re mentioning trouble you.

In the end you’ll both have to think about if or to what extent you might have to redefine your relationship. Ask yourselves: Would I betray myself by changing this behaviour? If the answer is yes, then maybe you shouldn’t change it, if the answer is no, think about why you’re not willing to adapt. (E.g. Is it actually important to you to have a word in where to sit in a restaurant or are you just struggling to adapt to this change?)

Communicate direct and clearly. Ask questions if you don’t understand something (e.g. I’m sure there are many reasons why your friend wants to control your seating in a public location. Sometimes sitting in a corner can be much more comfortable sensory wise than sitting in the middle of the chaos around you.)

Quick note: Please be aware that I am not officially diagnosed as autistic and I have little experience with those kind of issues, so this is very unprofessional advice. Hope it helps nonetheless.