Can anyone help with advice?

Hi Betina,

I am father of an adult autist in late twenties with the same self care issues, despite a great deal of intelligence and capability.  Fortunately we are able to talk easily now after many years building trust.   But the same things apply they need their space to be private but dont take care of it, or keep clean.  Washing up is a Big Deal, and I dont mean that as criticism I mean I understand it is an enormous effort for them.  So I totally identify with what you are saying.

I have often debated with myself are they being lazy, should I be being more directive. But I always come down on the side of supporting and trusting that they are managing their time and energy as best they can, but are overloaded enough that they cannot do tasks that they know matter.  But in my case if I do decide not to fix stuff and let them experience the consequences of their own decisions, then it doesnt really affect anyone else.  That is what is different in your situation and reason that the comments of others to get help with this are so appropriate.

Others have made some great suggestions.  Talk to other people, get some support, dont let yourself be overloaded.  I can see you know you need to take care of yourself as well, dont feel you have to solve everything.

On motivation that is such a key question.  In my case they say that they dont have any, basically about anything.  Certainly they have desires to be creative, to do things that others recognise as worthwhile, to achieve something to be proud in, to not be disruptive for others around them.  But they say this doesnt connect up well with the actions that would be needed to reach those goals.  I think recognition, pride, not being disruptive are very complex concepts to them, so they dont feel any confidence that they can choose the correct action to achieve them.

We have the most success with simple direct specific requests which have advance warning wherever possible.  Your sisters are coming to stay could you clean your bathroom before they come at the weekend is much more likely to managed than please keep you bathroom clean for guests at all times.  Of course sisters are a great help, they give direct feedback anyway!

Is it unusual behaviour, I doubt it.  My sister may be an undiagnosed autist.  Once she left home she had intermittent trouble keeping her flat and self clean, which cycled with her depression.  But she never had children.

I think you are an absolute hero taking care of them both and wish you every success with finding help.  Make sure you look after yourself.  Get help if you need it.

Thank you so much for your reply, I really appreciate it. You are the first person in a similar situation to me, that I have had contact with. Situations are easier to handle when you realise it's not only you.

So much of what you have shared, I understand.

I do talk with my friends but they have no understanding. Just tell her to tidy, they say. If it were that easy. However, I took advice given here and spoke to a friend. Told her everything we are going through and to my relief she listened. Most importantly she listened without judgement.

I now need to talk with our GP and see what support/help is out there. 

Once again thank you for listening.

Betina said:

I do talk with my friends but they have no understanding. Just tell her to tidy, they say. If it were that easy.

Hahaha.  I have another child who is my truly wild-child.  20 years ago when she was a teenager it was the conversation with others in a similar situation who were helpful.  Everyone else would just tell me to get her in line.  But others facing the same issues could understand that she was upset, depressed and not coping, and getting in line was not an option.  In the end I took her out of school and home educated which was a life saver  It took her another 10 years to come to terms with her neurology, not autistic, more mood dysregulation, and to learn to manage it enough to be able to function and get herself an education, now doing a PhD so she has mastered the academic life at least, though just as Losan says, she is never going to be neurotypical for moods.

I'm so glad that you have started to find some support.  The GP will put you in touch with useful groups, especially carers support groups where you can contact other local people who understand what the demands feel like and how hard it is to manage the relentless need.  I hope that now you have started reaching out you will find the support that makes possible continuing the support that you are clearly very committed to.

Feel free to PM anytime if you like.

Betina said:

I do talk with my friends but they have no understanding. Just tell her to tidy, they say. If it were that easy.

Hahaha.  I have another child who is my truly wild-child.  20 years ago when she was a teenager it was the conversation with others in a similar situation who were helpful.  Everyone else would just tell me to get her in line.  But others facing the same issues could understand that she was upset, depressed and not coping, and getting in line was not an option.  In the end I took her out of school and home educated which was a life saver  It took her another 10 years to come to terms with her neurology, not autistic, more mood dysregulation, and to learn to manage it enough to be able to function and get herself an education, now doing a PhD so she has mastered the academic life at least, though just as Losan says, she is never going to be neurotypical for moods.

I'm so glad that you have started to find some support.  The GP will put you in touch with useful groups, especially carers support groups where you can contact other local people who understand what the demands feel like and how hard it is to manage the relentless need.  I hope that now you have started reaching out you will find the support that makes possible continuing the support that you are clearly very committed to.

Feel free to PM anytime if you like.