Frozen in time

At this time it feels like our family is frozen in time. It is groundhog day every day.

My 20 year old daughter gets up at 11:30am and goes to bed at 2:30am. 2 years ago it was much earlier but it has gotten worse every day and now this has been like this for months and it feels like we are all frozen in time. Every day the same.

She doesn't want to go anywhere and doesn't want to be left for more than 30 minutes so we are stuck. My wife and I can go out on our own but not as a family or together. It used to be more possible.

These times are also impacting everything and cause issues whenever we need to go anywhere for any appointment unless the appointment is 4pm or later.

We are getting nowhere to change it. We talk about it together. I feels like she is being resistant and any suggestion my wife and I have is knocked back so now I feel there is no point to offer any suggestion. Our daughter says she wants step-by-step instructions otherwise it's not possible. '5 minutes earlier' each day is too vague but that is what everyone we have talked to seems to say. 'just do 5 minutes earlier'. She once said we are not trained autistic professionals so our viewpoint doesn't count.

She says 'can't do it'. I ask why 'don't know'. She feels comforted with medical explainations to thinks and labels on things to identify why but that doesn't change anything.

We've got an appointment coming up at 12 noon. We have told her 2 weeks in advance and said she would think about it, which means she'll ignore it until we have to go, then it becomes a massive issue to work out how to reschedule her long getting ready rituals (approx 3 hours), which can't be changed or shortened,  which often cumulates in us all getting frustrated and having to go to the appointment and apologise to the people or for us to reschedule it if we can get in contact in time.

What sometimes works if I suggest to her that she has the answers, she can work it out, she knows what to do because if it comes from her she sticks to it, until she says she is bored of doing it but this doesn't always work either. 

Can anyone offer any suggestions on a way to make progress on this that she'll accept? Anyone have any experience of this or can help me to understand from a similar point of view that she has.

I question: How much of this is autism, how much anxiety, how much neither?

I just want her to wake at a more normal time to enable much more in the day. I want to work with her and her autism to make this possible but right now I feel like we're stuck and there is no sign of any change.

Parents
  • Good morning from America, kov!

    I’m not sure I can help much, but I do want to say:

    She once said we are not trained autistic professionals so our viewpoint doesn't count.

    That’s not fair. Just because you’re not “trained autistic professionals” does not mean that your advice does not count. In fact, you being a parent of an Autistic individual makes you more of an expert than most people.

    I am wondering though, what is making her stay up so late? Video games? Friends? Just feeling more productive/active when others are asleep?

Reply
  • Good morning from America, kov!

    I’m not sure I can help much, but I do want to say:

    She once said we are not trained autistic professionals so our viewpoint doesn't count.

    That’s not fair. Just because you’re not “trained autistic professionals” does not mean that your advice does not count. In fact, you being a parent of an Autistic individual makes you more of an expert than most people.

    I am wondering though, what is making her stay up so late? Video games? Friends? Just feeling more productive/active when others are asleep?

Children
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