Lack of understanding from friends and family

I wish it was possible to have more of an insight into your life, but I can only share my own experiences.

I found I became trapped with a desperate need to be seen as like everyone else that I would accept pretty much any level of toxicity in a friendship/relationship/family because I was desperate for friendship - well I say friendship, for feeling 'normal' is more likely the truth.

This likely led to a long negative period in my life, when I developed self-protective traits that never quite worked. I developed negative stimming and self-calming behaviours - which provided, at best, partial relief form burn-out.  I have fully burnt-out several times.

It took until I nearly reached 60, and doing a job where my role is to support others in the criminal justice system, that I first had the opportunity to begin to explore myself and my behaviours with the tools I learned I think I have developed a deeper level of insight and understanding into myself. I am high functioning with a high IQ. too, which I cannot quite decide whether that is a benefit or hindrance.

I have come to the conclusion that I need to be open about my autistic, trauma and self-identity needs in all aspects of my life. My needs are not going to be met if I don't make them explicit.  I am aware that I don't yet know all my needs, but engaging with neurodiverse groups is helping me to understand more of those aspects. I think there is a level of shared trauma within neurodiverse groups. I also think I often fail to recognise my own stimming behaviours, because they are not strange to me. As to my self-identify, I am still learning what mine is, because I have kept it hidden from myself for so long in an attempt to fit in. I am currently enjoying expressing myself through my clothes without the crippling fear of others' opinions.

I feel I have rambled on a lot, but the point I am making is we cannot start to be ourselves and live our lives all the time we are trying to meet the needs of others. Also, I am terrified of rejection - that is part of my trauma response.  Knowing that helps me be braver in accepting the risks I am taking in the decisions I make where rejection is part of the choice I make, rather than a result of me failing to meet another's needs. 

I totally agree with you about NT's not being communication experts, some people like to make another over explain themselves, it's about power and control and also they're often the sort of people who are a sense of offence looking for somewhere to mannifest.

Do you have any gay friends? I've often found gay people much more accepting because they've had to really think hard about life and make some difficult choices.

Hello,

it is an issue when trying to explain how autism affects us. I have had more understanding from complete strangers than from my family and some friends. True friends will be there for you and the ones that simply cannot take on board what autism involves then maybe they are not worth the effort. I am proud to be autistic.  

Oh I think you're absolutely right, another thing that adds to that is my amazing gayness and my mother's amazing homophobia, so there's absolutely an unsafe space (so I'm still closeted) and if I ever were to come out she would absolutely feel like she'll never have the experiences she hoped for with me, and even now I'm not as straight as she'd like me to be, all her expectations are definitely not coming true. I think you're right and she feels sadness, and I feel too, I have mourned the loss of a great family experience, I know she won't be good to me and now, I've learnt to be appreciative for what she can give me and let go of what she can't give me, but I guess she hasn't learnt to do the same with me. 

Do you ever wonder whether some of this could be her sadness about what she likely sees as your life limiting situation. the fact that you will never generate the type of memories she and others have.  That her memories of you will likely always be edged with sadness?

This is what I mean when I talk about trauma - both you and your mother are likely to not be getting the social responses you need to engage with each other safely. This is a different barrier to autism because the neurotypical person has to be brought into this conversation and to have their trauma acknowledged. 

I do wonder whether we forget that neurotypical doesn't mean communication experts. Especially when dealing with those of us who are neurodivergent.

 
I know I put up many barriers to protect myself, trying to learn the instinctual responses needed by the neurotypical.  Having taken many of those barriers down recently and being more open about my needs with the people I deal with has made life a lot easier for me and them. I remain autistic, but I rely less on my trauma responses.
  

I don't think it's that she thinks I'm not grown up, I think she thinks I'm not trying hard enough to enjoy all the foods or life in general or maybe she thinks I'm trying to be the center of attention by actively being different? I don't know. Or it might be a culture thing; here where I live, people really like to force food to you and if you don't accept they might think you're rude, atleast that's what I think, but you should also be careful not to accept the first time, you should reject it the first couple of times then accept it. They are crazy I swear. I always defy this tradition and act honestly, if I want it I'll accept it, if I don't I won't. 

I think a lot of people try and infantilise us when we say we have ASD or depression and come up with all the old tropes about "imagining it" or something equalling daft. You're a grown up, why can't you decide what foods you like and what you want to eat when? Maybe you should ask your Mum when you'll be grown up enough to decide those things?

Cosmo said:

I have no idea how these people's brains work

Might be best that we stop trying to work them out. I seem to waste far too much of my time doing so and getting nowhere. 

My mother is similar. I recently told her I think I'm autistic and she was so kind and understanding, but she still gets upset when I don't eat everything, or when I'm bothered by certain lights. She was like this when I was getting help for my depression as well, at first very kind, but then coming to me saying :"Are you trying to make yourself sad on purpose?"

I have no idea how these people's brains work.

You're the same person as you were before diagnosis, the person that your friend liked and found things in common with, maybe you could ask him why your diagnosis has effected him so much? I think this really is his problem and not yours and it seems like he has some deep seated fears about being around or associated with people who arn't "normal".

I'm gob smacked but not surprised at the comments about having children, I'd turn the question around and ask 'why wouldn't you want an autistic child?'. If autism was as problematic as sp many people think, then we wouldn't be here, we'd have naturally died out as for generations no one would have children with us. That's even if you believe that theres a genetic link to autism.

I wouldn't be able to be this accomodating to someone I thought of as a friend, I would of retreated in a puddle of confusion and hurt and probably never of spoken to them again. I have had people say similar stuff to me and I feel like I've been stabbed in the heart.

I was interested to read about your experience.  I do wonder how much of this is partially trauma based for both of you.

I am still waiting for a formal diagnosis - 4 years on the waiting list, but live in the UK, where self-diagnosis is accepted in most situations.  

I do think that there are two issues, one around how neurodiverse and neurotypical brains work and another around each of our trauma experiences. Maybe more open discussions about how traumatised you are - I know I hide behind a wall of responses, due to childhood trauma of trying to socially connect. Maybe ask your friends about any difficulties they have in engaging with you - such as which person am I going to meet today.

The more I look into this, and I am a professional in dealing with emotional response systems, the more I believe we need to address our and our social circle's behaviours in terms of diagnosis and trauma experiences.

Sorry

Just avoid confusion I meant my wife reacted badly towards me being autistic and not my son. Although it did take some amount of time to sink in with that. 

Hi Nat

very interesting post. I am not diagnosed as yet but intend to be assessed in the near future. My priority atm is to help my son in every way possible before I turn to myself. 
I had a similar response from my wife about this, she was the first person to bring it up but when I started to look into it (obsessively I might add) she not only didn’t want to discuss things but asked me to never mention it again. That response alone sent me into a dark place for months. 
So I understand how hurtful that sort of reaction from a special person in your life can be. 
All said though I have found over quite a few months that my wife has come around and started discussing the subject but I do feel as she is Nt she will never fully get it. 
I am in the process of writing a manual about my son, his traits, coping mechanisms and general day to day survival stuff really. It’s going to be distributed to grandparents and family members initially, this is predominantly so that he is not misinterpreted and to explain how to deal with certain things that can crop up. 
I thought maybe this sort of idea for your friend would help as it’s quite informative and personal to you, your triggers and how you generally get by in your day to day life. 

Just a thought and I really hope your friend can work towards understanding 

I feel you've got the right idea with it. Less criticising them but more offering solutions, things they can do to help etc. 

It always seems easier to give others more leeway/understanding than we give to ourselves doesn't it. I'm going to go ahead with the presentation, make it a bit tongue in cheek/entertaining too so hopefully goes down well. My friend did agree that was a good idea, he wants to learn which is great and all I can ask for really, hopefully the deeper understanding will come after the learning.

That sounds really positive that you're helping to create materials. There definitely needs to be more awareness and understanding from mainstream, as the stigma and myths associated with autism is what led to many of us being only late diagnosed. 

I would say I have been met with utter disinterest tbh, but I suppose that's better than a strongly negative reaction.

My employer now has a "neurodiversity champion" as part of the HR inclusion and diversity team. I've been helping her create some materials for use by others .

I see. I don't think it's too much to ask but then I'd say that it is when it comes to myself.

Thank you for your advice. The energy comment I meant more in terms of is it too much to ask for extra accommodation/energy from others in taking the time to understand my condition. I think because I'm newly diagnosed I'm still getting to grips with this myself and I do feel a bit of a burden on those around me. Hopefully we can get to a point of mutual understanding 

The PowerPoint thing is not a bad idea. I made a similar thing for my parents a year ago, and at least for a few months it seemed that they did take it in.

I can understand how frustrating it must be with your friend though. I think giving yourself some space to really think about the next steps is really all you can do - if it is beginning to sap your energy it's not the greatest sign, in my opinion anyway.