Shutting down

Duckeggblue said:

I am frustrated with myself because I had to leave my job and I am so desperate to have a career and be independent and have a steady life and be anonymous like other people but I don't know how to achieve it. I am intelligent, but I'm not sure where to put it to make good things happen.

Likewise, like you wouldn't believe. You are very understandably—and completely entitled to be—overwhelmed. It sounds like you have a huge amount going on at the moment that is largely out of your control, and that always sends me into meltdown too.

Briefly: I have ongoing issues with noisy neighbours as well (both next door and downstairs), which I find sensorily excruciating and emotionally stressful and draining; the management company is taking legal action against the latter, but she decided to try to confront me about it on Friday. The result? I hid in my flat all weekend with the doors locked, curtains shut and phone switched off, and I haven't been able to walk for the last three days due to the way the stress has affected my legs. Then, yesterday, I received a letter from HMRC fining me for over £2,300 for something I haven't done, and today I've had a letter from my mortgage company telling me to do something that, it turns out, their IT system and help desk physically can't do. I also woke up with my period this morning, have an impacted wisdom tooth, and over-heated when the sun came out... at which point I went into full meltdown (crying, rocking and punching myself). So please trust me when I say, I completely understand. Unlike you, I'm really fortunate that my boyfriend and my dad are both incredibly sympathetic although other family members far, far less so. At my niece's christening a few weeks' ago, my uncle spent a good 15-20 minutes lecturing me about getting a job, as if I'm currently not working and sleeping on a floor out of choice. Were it not for the fact that I was so completely blind-sided by it and so completely exhausted from just being there among people, I probably would have walked out to have a meltdown in private.

Just like you, I'm intelligent and I want to be independent. I think sometimes we have to be what NTs call 'selfish', but what I call 'self-preservation'. Self-preservation does not make you a bad friend, daughter, sister, niece or anything else. It makes you a normal human being trying to cope with a challenging disability in a very unsympathetic and chaotic world. All I want is a quiet life and I have no idea how to achieve it either, but I did have a lightbulb moment at the weekend when my boyfriend said this: Everyone else seems to do what they want and ignore what we ask of them, so why don't we just do the same? When people give you either/or options, figure out what you want and need, and if that includes not responding at all, then don't. Easier said than done, I know, and right now I have no idea what to say to HMRC or my mortgage company, but clearly I know I can't do nothing. However, as long as I can't walk, I can't get to the postbox to send a letter, so I might as well just focus on trying to regroup. When my physical, mental and emotional strength returns a bit, I'm sure the solution will be apparent.

Can you make an appointment to see your GP? I know you have to wait weeks sometimes, but maybe if they saw how distressed you are getting they might speed the process along? It's cruel that we have a system in this country that takes advantage of the very nature of the disability a person has to avoid providing adequate care and support. I hate making phone calls and doing the whole face-to-face thing, and it's wrong that those are the only ways to access help. Can you ask your support worker to make the appointment for you if it feels too much at the moment?

You are no less intelligent or independent for needing some extra care and support right now, even if that support is just everyone else giving you some peace and quiet for a few days. Of course, if someone said that to me right now, I'll tell them they don't understand and to f**k off. Okay, so maybe scratch that and replace with this: Take some slow, deep breaths and remember, you are not alone in how you feel right now.

Take good care, sweetie.

Hello, thank you for your reply and sharing your experiences. It was good for me to be reminded that I am not alone in these experiences (as sometimes the world can feel very lonely and frightening), and that I am quite a normal young lady learning to manage autism as an adult.

I am sorry that you are having neighbour problems too. I am worried about telling anybody specifically because I find confrontation very challenging and I don’t want to make it worse, but there was another incident earlier so I feel as though I need to do something. When you wrote about hiding in your flat all weekend it resonated with me because that’s what I do too. I am fortunate that if I receive unexpected letters I am allowed to give them to my support worker to open them as I can’t cope with shocks like the ones you have had whilst on my own.

I recently went to see a play called “The Duck”. It is autism-friendly (they give you a bag with things you might need like ear plugs, fidget toys and information), written by a woman with autism, acted by a young woman and it tries to provide insight for people who don’t have autism to gain greater understanding, but was helpful for me to watch somebody have experiences similar to mine. This is the website if you (or anybody) is interested: https://autact.co.uk/ . I would one day like to take my family to see it in the hope they might be more forgiving! I am getting better at blocking out lectures from relatives, and instead trust in myself that I am trying my hardest- CBT has helped with this.

I am pleased that you differentiate between ‘selfish’ and ‘self-preservation’. I often get accused of being selfish or inconsiderate when I’m just having to protect myself from a tough time. I find it hurtful, but I hope it is misunderstanding rather than truth. I find it difficult to explain this to my family, but I might try and explain using ‘self-preservation’ in the future. I think your boyfriend is correct. It is a difficult think to do because I spent my whole life being told that I’m wrong or defective in some way, which became a belief. I am practising accepting that it is okay to not respond, or decline an invitation, but I’m still very much learning that this is acceptable. I think it is great that your boyfriend can help you in this way. I hope he can help you with HMRC or the mortgage company?

I had been trying not to make a GP appointment as I always feel I’m wasting their time, but I think I will ask my support worker to help when she comes tomorrow. My GP is very good with me, and often if there are no appointments for a few weeks then she will call me at a specific time. I will see tomorrow. I am feeling a bit calmer today after being given some space.

Thank you for your suggestions, support and understanding. It was very helpful 

Hello, thank you for your reply and sharing your experiences. It was good for me to be reminded that I am not alone in these experiences (as sometimes the world can feel very lonely and frightening), and that I am quite a normal young lady learning to manage autism as an adult.

I am sorry that you are having neighbour problems too. I am worried about telling anybody specifically because I find confrontation very challenging and I don’t want to make it worse, but there was another incident earlier so I feel as though I need to do something. When you wrote about hiding in your flat all weekend it resonated with me because that’s what I do too. I am fortunate that if I receive unexpected letters I am allowed to give them to my support worker to open them as I can’t cope with shocks like the ones you have had whilst on my own.

I recently went to see a play called “The Duck”. It is autism-friendly (they give you a bag with things you might need like ear plugs, fidget toys and information), written by a woman with autism, acted by a young woman and it tries to provide insight for people who don’t have autism to gain greater understanding, but was helpful for me to watch somebody have experiences similar to mine. This is the website if you (or anybody) is interested: https://autact.co.uk/ . I would one day like to take my family to see it in the hope they might be more forgiving! I am getting better at blocking out lectures from relatives, and instead trust in myself that I am trying my hardest- CBT has helped with this.

I am pleased that you differentiate between ‘selfish’ and ‘self-preservation’. I often get accused of being selfish or inconsiderate when I’m just having to protect myself from a tough time. I find it hurtful, but I hope it is misunderstanding rather than truth. I find it difficult to explain this to my family, but I might try and explain using ‘self-preservation’ in the future. I think your boyfriend is correct. It is a difficult think to do because I spent my whole life being told that I’m wrong or defective in some way, which became a belief. I am practising accepting that it is okay to not respond, or decline an invitation, but I’m still very much learning that this is acceptable. I think it is great that your boyfriend can help you in this way. I hope he can help you with HMRC or the mortgage company?

I had been trying not to make a GP appointment as I always feel I’m wasting their time, but I think I will ask my support worker to help when she comes tomorrow. My GP is very good with me, and often if there are no appointments for a few weeks then she will call me at a specific time. I will see tomorrow. I am feeling a bit calmer today after being given some space.

Thank you for your suggestions, support and understanding. It was very helpful 

You’re very welcome. I’m glad I was able to help a little and hope you can get things back on track soon. Thanks for the tip about the play—I hadn’t heard of it but will definitely look into it.

If you ever want to chat more, please feel free to message me.