Published on 12, July, 2020
Hi All, I have twin sons aged 21 who had a late deaf diagnosis at 3 and consequently had very delayed speech and development generally. Academically and speech wise they eventually caught up but emotionally I felt they never did and still haven't. They are incredibly bright and achieved excellence GCSE and A Level results but having left college 3 years ago things took a downward turn. I have suspected for sometime that they had Aspergers as they actively avoid any form of social situations and people, even those visiting the house, they will hide in their bedroom with an excuse. They won't open the door to anybody even to take a parcel in. Last year I took them to see a Psychologist who undertook a part assessment who felt they did indeed have Aspergers. They took this very badly actually telling her she was wrong and one of my twins talked through with her that he felt he had inattentive ADHD but she didn't feel this was the case. We came away having arranged to go back at a later date for a full assessment. A few days later the psychologist contacted me and said she had spoken to colleagues who felt that maybe the deafness had had some impact on their problems and that as they were so against obtaining a diagnosis it wasn't ethical to continue. They were delighted and have told me that they have erased it from their mind the meeting didn't happen. I am not so delighted as we are back to square one. Despite numerous attempts to encourage them out into the real world they don't budge. Currently they live in their bedroom (which they share, space means there is no other option) they go to bed about 4, 5 or 6 am sleep all day and are up all night. I have tried and tried to, in the beginning at least, get them to go to bed at a more reasonable time and be up in the morning so they are up in daylight hours. I have asked them to set reminders, focus on just getting to bed as close to midnight but nothing works. I have sat up until 1 or 2 in the morning to get them to bed and whilst I have succeeded as soon as I step back for them to carry it on they revert back. They shower at 4, 5 am and I have asked them to shower in the morning or daylight hours but they just ignore my requests and carry on in the same routine. Another thing they do is log everything even down to how long it takes in the toilet, which again is a big issue, they have to go at the same time as each other, not sure why and one of them spends one hour in the toilet for a number 2 and one hour in the shower and again I cannot get him to try and speed up and reduce the time. This is no life and with no income myself and my husband support them financially, I worry constantly about the future, how can they ever live on their own, how will they support themselves when we are no longer around. We have visited the GP three times but not really to any avail, because of their age and funding they say there is not a lot they can offer them and this was pre pandemic so I am sure it is even worse now. Crucially I think the problem we have is that they are not saying to the doctor I think I have this problem could it be Aspergers so there is no one to refer them to as they when confronted by the doctor's questions say we don't do it but we could but actually they can't/won't. Any advice on where to go from here would be greatly appreciated. Thank you.
Fascinating account that sounds like it puts you all in an approximation. The independent living & future outlook feels the bleakest with such an opting out. On the bright side this a type of 'silicon valley' no sense of time lifestyle evaporated from around those who lived it for microsoft et al. It could be surprising how they might suddenly mobilise one day as if nothing happened. Or not - it must be quite difficult to tell what shall lie ahead. The clinician was right insomuch that without service user permission there isn't a rational diagnostic path to follow. Often Aspergers people do enjoy the concept of being active when others are horizontal, a flawed concept given that half the world actually isn't. But then disappearing into a microcosmic version of world often features a reframing of reality that on the bottom line is there to suit how some people like to feel. This could be simply as who they might be communicating wth online are available during those times. Or maybe there is something more profound concerning a perceptual element, or at least a concept that states to they, that their peace of mind is better facilitated under a form of lab condition that eliminates contact from the outside. Which of these two could be fairly definitive, as one is only for sheer convenience & could take place any time that the actors within that utility are available. The other wants to be well away from other human beings, so obviously there is a fair amount to be learned from the inclination side of the habits.
In that sense it might be worth remarking that from to see if you could find that out through tentative measures could be helpful. If you obtain this insight, then it might help inform on what could be the next thing. Really they've demolished the path toward a clinical demarcation for the foreseeable future, and this seems like an option entirely closed to yourself as a guiding light. Whilst - while cohabiting they cannot expect to have erased your mutual interest in this as a general affair of the household. You might reassert some increased sovereignty over their nation lol
https://en.wikipedia.org/wiki/Frestonia
And your pantomime skills may facilitate for you an increase espionage capability on their small country given that they actually exist as a vassal state. Presumably they'll give might deny you a passport to pimlico, but since this is vassal there can be open borders. But seriously - what apple cart that might up end only you'll know. I take it you hoover & change the bed linen, and maybe they should get a sense of increased presence or not. A coherent beginning to things isn't just a positive move, but can often be supportive to the supporter. You have an odd role are a type of carer here, & carers need the means to feel ok in themselves also.
Anyway - if the suggestion that it could be useful to ascertain by what perception they roam cognitions by night sounds reasonable good luck with any use it comes to. It may depend on how sure you are that something needs to change balanced by those concerns that such inertia exists that it might destabilise the future. You might also try to find out what self efficacy exists. Sometimes people go from this latency to perfectly good function, though it would help if they were taking part in the household. We cannot always predict what effect there is from opting out. There is a growing segment or subculture that entirely distrusts the establishment & consider any removal of themselves from 'heir world' as positive. That outlook though very real in certain cases, is a tall conclusion to jump to. That could be why its best to try to learn more concerning the drives.
Good Luck