Published on 12, July, 2020
Daughter 17, was diagnosed with autism in July this year, she had been masking.
She has been struggling with making friends and has a lot of anxiety concerning this.
Attending 6th form College has become too much for her due to the travel and loneliness, therefore now studying online. Of course this has resulted in her becoming more isolated which we tried to talk to her about before she made the change but she wouldn't listen.
She hasn't done any studying for two weeks and has been spending a lot of time asleep. I understand that she might be tired if she has been coping with her day, but today for example she has not been out of the house and only just got out of bed (6pm). I've suggested that she might be depressed but she says no and won't let me make an appointment with the Dr's. Even if I did make one without her approval she would refuse to go. - she reckons that she will go to Uni next year and will make loads of friends and be away from her horrible parents... I've tried to suggest that she may not make friends for a variety of reasons but she won't listen and I'm being negative.. but as I've said she isn't doing any work...
I've tried to suggest different social groups both for autistic people but she won't go
I don't know what to say or do.... help...
Two things which may or may not be helpful:
(1) Is it possible she is studying late at night or in the early hours of the morning, then sleeping all day? A lot of autistic people have difficulties sleeping, and I was most definitely a night owl. At uni, when I no longer had the structure of school or my parents' support, I would study from around 1am to 6am then sleep for a large part of the day. It's quiet, dark and cool at night so there are far fewer sensory distractions, and even less people interruptions.
(2) Is it possible she's shutdown or burned out? Being a teenage girl is hard enough, but if she has been masking her autism for years on top of all the normal hormonal changes, exam stresses etc. then she may well be exhausted. Given she was only diagnosed in July, she also probably has quite a bit of processing to do i.e. thinking back through her life about misunderstandings etc. and now making sense of it all. Just that in itself is draining emotionally and mentally and takes time and space.
When she does get up, is she eating and drinking etc.? If not, then I can understand that would be a huge concern to a parent but, again, it's not that unusual for someone who is autistic to forget to do those things and other basic self-care. In terms of going to university, maybe she could do a foundation degree with the OU to help develop healthy study/self-care habits, and then do a top-up degree at another uni? To be honest though, it won't really matter what you suggest because, as Plastic says, she "knows best" (and "teenager" + "girl" + "autism" is that x100).
Nessie, she was staying up all night studying, but I don't think she is now.. She does eat and drink when she gets up, varying degrees of quantity of food. In terms of self care, she can go all week without washing herself or her hair. For Uni, she is adamant that she wants to move anyway and once she is at Uni she will gain loads of friends, be away from her parents and everything will be OK.
Oh dear, I am so sorry. You must be incredibly worried about her and her future.
You may just have to let this play out and know it's going to get worse before it gets better i.e. deal with the fallout of her not passing her exams, or her going off to uni and having to drop out. As auties, we do really struggle to foresee that reality could turn out differently from how we imagine it, and it's only through experience that we become wiser. Unfortunately, sometimes that experience needs to be repeated a few times before we learn, as we also struggle to generalise. I know as a parent you want to help her develop self-awareness and life skills to avoid these pitfalls, which are so glaringly obvious to you, but this is one of the deep frustrations of autism, especially to neurotypicals.
I think all parents are heroes with the amount of patience and unfailing love they show their offspring; I think parents of autistic children, all the more so. Are you able to get some support for yourself from a local group, even if your daughter is unwilling to engage with any help at this stage? Alternatively, it might be worth you phoning NAS to see what advice and support they can offer or put you in touch with.
I really do feel for you and your family. I wish there was a clear and simple solution for you, but I suspect that is unlikely. I am sorry.
Great! It's a lot to take on board - a whole new way of thinking.
Nessie/Plastic
Back from the first parent support group, found it really useful, I have more understanding and feel less alone now
Christmas fairy said:starting a weekly parent support group today that ends just before Christmas. This group was suggested to us from the team that diagnosed her
That's great news. As Plastic said, I'm certain you won't be alone with these kind of worries and frustrations, and it's important that you have a space to vent and look after your mental health and wellbeing too. I'm sure we'd all love to hear how you get on today so do keep us posted if you feel able.
Awesome - don't get involved in that relationship - just ask Grandmother to sound her out and make sure she's ok - make sure she understands that she'll always be loved and that if everything goes wrong, you'll be there for her.
Have a good time at the group - ask lots of questions!
Plastic, she talks/texts her Grandmother.
Nessie/Plastic, starting a weekly parent support group today that ends just before Christmas. This group was suggested to us from the team that diagnosed her
Yes - I think you're right, Nessie - she might have to just do things the hard way to learn.
I would agree with getting yourself along to a parents' support group - meet other parents and understand the things they go through to see that your experience is not uncommon. It's unfortunate that she's been diagnosed at such a crucial time for her academic life and that she's not following the typical prescribed path. It makes it very difficult to feel comfortable with her future to reduce your own stress - feeling like she's 'doing ok' is important to parents' well-being. .
How on-board are the rest of the family? Do they support her? Does she chat to grandparents or any other family members who could communicate easier with her? Someone to mediate between yourself and her? Someone who can take all the emotion and strong feelings out of the relationship and transmit the facts between yourselves?