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Self help

Rob

I dont see much value in an autism diagnosis. It is useful to know - yes or no. But it is more important to find out how to cope with the shutdowns. When I have a shutdown it's like pressing ctrl/ alt/ delete. I sink into a highly dissociative state and then come out feeling fresh (sometimes a day later sometimes more). In the meantime, during a shutdown anything I have been working on slows down or stops or is lost. I find I have to re-start various tasks or somehow use the recovered energy to get things going again. I have been so used to them all my life that I just thought this was 'normal' and 'getting tired' - but this inevitable and inescapable cycle of experiences is much more serious and damaging. Shutdowns have been extremely disruptive. It would be more helpful to know how to prevent or deal with them. There is limited advice on this. Oh and there are also the other problems - frequently unable to relate to people naturally, or look people in the eye, speak in a normal way, etc - which seem to be a signpost of the way into shutdown and also motivates shutdown. It's horrible to waken up in a panic during the downward phase with heart pounding and afraid of something indefinable. This happens less in the brief 'recovery'  phase. However, the pandemic isolation has mainly been an 18 month period of 'downward' spiral. I have tried cognitive behaviour therapy but it is very limited in usefulness. Antidepressants were also only of limited use. The challenge seems to be learning to live with it but theres not a lot of advice or encouragement  on this.  

  • in reply to Rob

    I understand now. Have you not been offered any post-diagnosis support? I've received a great deal, but this is all tied to the NHS assessment/diagnosis process.  Apologies, I struggle with large blocks of text.Slight smile

  • in reply to ☕Tassimo ☕

    Sorry, I didnt express that very clearly. The key problem is the lack of support and services for individuals in need. I am struggling to see the value of just knowing the diagnosis - when there is at the same time an inadequate focus on providing help and solutions that can get you through each unpredictable, destructive, depressing, disorienting day. Is it too much to ask for more understanding and professional support? A diagnosis is just the start but currently seems to be the beginning and the end of professional input. It's extremely difficult to get a GP appointment where I live so finding one who will research and refer on your behalf is even less likely. There are scarcely any groups and I have found no local organisation etc which recognisesthe need to provide dedicated 'care' to help you manage through each day. I guess most individuals, like me, just rely on themselves - unless they have a network around them of family and friends. In the absence of  clinical or professional or family help, there are probably a lot of people just left in isolation - with or without a diagnosis. Hence the question about self help. What can you do by yourself to cope with the endless disorder???

  • Hello. What is the point you are trying to make in your post? That an assessment and diagnosis have no importance? 

  • I suppose a diagnosis would allow people to have the supports they need in place. I think that you (and everyone else) has their own natural rhythem in how they do things, and no one can be productive 100% of the time. I'd think that trying to prevent shutdowns is like trying to prevent yourself from sleeping, people need a break to rest and disconnect from time to time. But being too disconnected can be disruptive as well. I think many people during the pandemic have a fear of the unknown, but if you wake up startled and in a panic quite frequently, it could be caused by a variety of things, stress, trauma, medication, your diet (lack of nutrients, food sensitivies, allergies), and there are just many things that could affect the body that would be good to look into.