Are things JUST different?

No, I don’t think things are more difficult for an autistic person than they are for an nt person. And how could that even be quantified?

There are many aspects of myself, the autism, that give me a distinct benefit over nt people. It’s apples and oranges. It’s our attitude, our mindset and our response to life, ourselves and others, that makes the difference, not our physical or mental set up. 

A victim mindset will always think it’s life is harder than other people’s lives and will use this as a barrier to even trying, and a loving, accepting and understanding mindset, will always see life as equal, but different, and it will put its focus on, how can I do better, rather than dwell on all the ways in which the life can be seen as terrible and worse than everybody else’s. 

A victim mindset will always think it’s life is harder than other people’s lives

Yes I agree ... I’ve got to work on my mindset. There is no doubt about that and probably this is what my wife wasn’t happy about. Saying that quite often I do struggle with setting boundaries. Example: Friday afternoon, my father in law has a appointment with a nurse, he refuses to go on his own because of his poor English (which is a big issue for me because I personally wouldn’t feel allowed to stay in this country if I wouldn’t make an effort to learn) I go with him anyway and I perform quite well in set social situations (as long as I can stick to my “script” and stories for social situations). He uses his illness and poor language skills to make me do things for him, including driving etc. Friday afternoon and is the most difficult part of the week as routine changes from work to weekend, heat makes me feel dizzy, confused ... I do avoid driving when I’m distressed which sometimes means that I have to get somewhere on foot or I’m not going at all. So I say that I can’t drive ... but he is not listening and says that he can’t move (which is not true). So my point is I had to refuse to drive three times and with details explain why and prove that his discomfort with moving his legs in this situation it’s nothing compared to my sensory issues etc. 

Can you “see” what I’m trying to say?

A victim mindset will always think it’s life is harder than other people’s lives

Yes I agree ... I’ve got to work on my mindset. There is no doubt about that and probably this is what my wife wasn’t happy about. Saying that quite often I do struggle with setting boundaries. Example: Friday afternoon, my father in law has a appointment with a nurse, he refuses to go on his own because of his poor English (which is a big issue for me because I personally wouldn’t feel allowed to stay in this country if I wouldn’t make an effort to learn) I go with him anyway and I perform quite well in set social situations (as long as I can stick to my “script” and stories for social situations). He uses his illness and poor language skills to make me do things for him, including driving etc. Friday afternoon and is the most difficult part of the week as routine changes from work to weekend, heat makes me feel dizzy, confused ... I do avoid driving when I’m distressed which sometimes means that I have to get somewhere on foot or I’m not going at all. So I say that I can’t drive ... but he is not listening and says that he can’t move (which is not true). So my point is I had to refuse to drive three times and with details explain why and prove that his discomfort with moving his legs in this situation it’s nothing compared to my sensory issues etc. 

Can you “see” what I’m trying to say?

That’s complex! I see millions of bright multicoloured dots though when my eyes are open or closed ~ I thought that was what we and the universe are made of. I sit for hours sometimes just looking at them, at their incredible outstanding beauty and perfection. I know that everything comes from them so although I like beautiful things, I know that nothing is ever as beautiful as these beautiful multicoloured dots. 

Do you have a support worker Jan84? Somebody who is there just for you, who you can spend time with each week, even if you only go and let of steam or whatever? I get a feeling that I want to wrap my arms around you (don’t get freaked out, this is how I communicate with people, on an energetic level but the communication doesn’t always come through in words) ~ I feel like I want to hold you strong and tight and love you until you can love yourself. It feels like you need a protected area in which you can use to let go of all that’s not you and come into a relationship with all that is you. .... this is getting weird (not to me, but probably to you), so I’ll stop. 

But seriously, have you got a one to one support worker? Relaxation, as well as friendships, leisure time, time for self etc are all important elements of everybody’s life, which I have only recently realised but that doesn’t mean that the way you relax looks like the way I relax etc but it is important to discover a way for you to relax, regularly, like, everyday and it sounds like you could do with some support to figure this out. As well as someone to let off steam to, who understands you. 

I feel like I’m starting to get the bigger picture now, of what’s going on from your original comment. I can’t lie to you, nobody on earth can say their difficulties or struggles are worse than somebody else’s but we do have to have our difficulties acknowledged and heard before we can move on from them or address them or let them go and this is where a support worker would be perfect. My support worker tells me, even if you just want to come in and moan and groan or whatever, you can. 

All that stuff with the double vision and dizziness etc is very complex and you need someone to support you who can understand all that as well.

I think my happy time is when I wake up at 3.50 in a morning (my waking up time) and all the rest of the world, including the animals are asleep. This time is so precious and special to me and it enables me to prepare for the day. It’s vital to your health and well being that you get that special time back for yourself and you’ll discover it much easier and probably quicker, with the right support. 

All the best Jan84. 

Are you managing to get time for yourself to simply be or to relax or whatever?

I used to say that “I don’t like to relax” now I’m more aware why... relaxing in not safe environment usually causes even more stress. So I’m still learning what would be safe environment for me ... I remember when I was a child I would wait till everybody was asleep and then I was having my happy time, it was so pleasurable I remember that feeling even today. I also remember how unhappy I was the next day when I fell asleep before everybody else. 

Today I’m still struggling to find equivalent of that... even when I finally get some time alone I find it difficult. Relaxing means that I’ll have double vision as I’ve got convergence insufficiency, to keep single vision I have to stress my muscles to keep my eyes aligned. Visual snow and tinnitus make me dizzy so whenever I stop moving I feel like everything around me starts to spin. When I close my eyes as an Aphant (somebody having Aphantasia which means blind mind, I’m not able to create even simple image in my head) I would be expected to see blackness ... I see millions of brights multicoloured dots, it’s very busy out there. 

When I start to relax I feel like all of those things takes over me, I feel like drowning.

well done Jan84, it sounds like a terribly difficult situation and you sound like you're handling it not only incredibly well but with compassionate consideration to your wife. I have great trouble saying no to anybody so if you're anything like me, that's a major achievement. Are you managing to get time for yourself to simply be or to relax or whatever? Anyway, well done, I think I would have run away by now. I admire you. 

You needed only to decline to drive him once, and then disengage with him completely

Yes, you are right, but I think because we live together it all gets complicated. Doing things for him is a way of protecting my wife from him and also a way of keeping my environment easier to cope. It works but only short term in a long run it makes things even worse. Long story. Tomorrow is his next appointment and I’m not going and I’m not going to explain myself.

You didn’t have to refuse to drive him, three times, and you certainly didn’t have to give him a reason. You needed only to decline to drive him once, and then disengage with him completely, because just the action of being involved in such an interaction at all, will require you to have a period of recovery time. If he doesn’t like that, that’s not your problem, it’s none of your business. You don’t have to take the responsibility of him on your shoulders, unless somebody has a gun to your head of course. 

I can see that you’re trying to tell me that your life is harder than other people’s because you’re autistic. Whether that is true or not, does holding on to that mindset, for dear life, help you? Or would it be more helpful to say to yourself, I’m autistic, I love and accept myself, I identify as autistic, it guides my life but it doesn’t define who I am. How can I make life more comfortable for myself, knowing, the difficulties I have with changes and heat and social situations etc?

I can see you already employ some tactics. I recognise them in myself. And I understand your challenges, I really do. How could I not? I’m autistic. But I have learned through life that it is only my mindset that will ever make life easier and more enjoyable for me. If I persist in refusing to part from a victim mentality mindset, then I will continue to face these daily challenges and the situations will not get any better. If I lose the victim mindset and decide to take responsibility for myself, I become open to ideas and opportunities that really will make my life better because I am solution focussed as opposed to having a defeatist focus. Neither way is easy but I like the results of one over the other. 

You have understood that you struggle with setting boundaries ~ I don’t even really know what a boundary is and I don’t like the sound of them and don’t want them. I have lived my life in what could be described as a closed solitary prison. I don’t want to put up any more boundaries. But I’m slowly learning what boundaries are and why they’re important. So you’re way ahead of the game than me. At least you know you struggle with them. I’m only just figuring out what they are. Instead of complaining about how hard life is for you, why not put some effort into learning how you can improve your boundaries and spend time practicing them. I bet if you put as much effort into learning about and practicing boundaries, as you did into complaining and playing the judge, you could have great boundaries in no time and maybe like me, you will rarely ever see your family! Lol! I love my family but I feel stress around them so I don’t spend much time with them and to my surprise, they seem to be ok with it. They’re probably glad! Lol! 

Best wishes with it all. You’re doing great. Truly. Please don’t take anything I’ve said as criticism. I am not somebody who could criticise anybody and I’m still learning and to me, you sound like you’re doing a really Stirling job. As you said, work on the mindset. It’s all a process and we all learn in different ways and in different time frames and the one thing we must never do, is criticise ourselves or give ourselves a hard time. Life can be very difficult. I’m not taking that away from you. I hear you. Now go and tell your wonderful wife how much you love and appreciate her and I can tell you from a female perspective, she just wants you to know that she exists as well, and life isn’t always easy for her either and I’m telling ya, I couldn’t live with an autistic person, so she deserves a medal. When we put our focus on somebody else and do something nice for somebody else, it changes our mood and always makes us feel better and I think your wife needs to hear that you hear her as well.