Is it Aspergers or deaf related?

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.

Parents
  • It is true that a lot of Deaf people are socially isolated due to communication issues however they are usually able to pinpoint that as the issue. It sounds like they are probably lacking the structure and routine that being in school and college gave them as their sleeping patterns have become nocturnal. Have a read about delayed sleep phase syndrome if you haven’t already. Sounds quite difficult to get structure back into their lives though if they refuse to leave the house. Would they be open to getting a job where they could work from home but one that requires them to stick to some sort of daily structure?

    with the assessment issues that is something they will need to be willing to engage with themselves. Some people find it quite difficult to accept that there may be something “wrong” with them if they’ve spent their whole life thinking everyone else is “wrong” and they’re the “OK” one, where others will have a lightbulb go off in their head when they realise they may be autistic or have ADHD

Reply
  • It is true that a lot of Deaf people are socially isolated due to communication issues however they are usually able to pinpoint that as the issue. It sounds like they are probably lacking the structure and routine that being in school and college gave them as their sleeping patterns have become nocturnal. Have a read about delayed sleep phase syndrome if you haven’t already. Sounds quite difficult to get structure back into their lives though if they refuse to leave the house. Would they be open to getting a job where they could work from home but one that requires them to stick to some sort of daily structure?

    with the assessment issues that is something they will need to be willing to engage with themselves. Some people find it quite difficult to accept that there may be something “wrong” with them if they’ve spent their whole life thinking everyone else is “wrong” and they’re the “OK” one, where others will have a lightbulb go off in their head when they realise they may be autistic or have ADHD

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