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Social isolation and lack of support

Listener2010

Hi,

Without going on and on, I am caring for my 16 year old daughter who has suffered with an ED for 3 years. I have had to resign from work this year to ensure I am here for her as she has not helped herself to her drink or food in 3 years. We had a brief spell where she begun to in 2024 but she restricted again last year and ended up in hospital for refeeding in March this year.

She received an autism diagnosis this year but rejects it. 

She has started college and is doing well there academically (as she always does) but struggles socially and has no friends she speaks to outside of college. I am her main contact at all times. She will not engage with support at college for social support. She will not engage with therapy at camhs. It is extremely difficult to untangle what is ED behaviour and what is autism. The clinicians she works with seem to have some idea of how to approach her but it is very difficult. She will not open up to a single soul and after covid and a bad time at secondary school along with hormones she is no longer able to do any of the things she enjoyed and in fact seems to be continually denying herself things nd im not convinced she isnt experiencing awful ocd.

All this to say I am governed entirely by her needs, dropping her at college most days and meeting her for meals which she won't eat alone. This means I get only a few hours to myself in the week between taking her back and forwards and meals and snacks as well as having my son who is increasingly pushed out due to her needs. I have no family support and we do not have a network of friends (we had our children in ours 20s and our friends are having theirs now and unavailable with babies and small families and jobs). I feel so alone and helpless and at the minute cant imagine a time when she will be able to be without me. It feels as though i am solely responsible for keeping her alive with no help from services beacsue we are 'aware and attuned parents' apparently. I have lost connections and do not fit into any criteria that qualifies for support. My husband has taken a new job to cover my lost wages but it means he works away so I am even more isolated. How are people surviving and making connections? I long for a network of people, not just for me but for my teenagers too!

Parents

  • I refused to accept the possibility I might be 30 years ago. I felt normal, I was good academically, I just didn't get other people, but I was quite bright so I thought it was that.

    I don't obviously stim, rock, make noises, have obvious learning difficulties. All my issues are more hidden and emotion/communication based and burnout related from pushing too hard. She probably has a mental image, and that is not going to be easily moved. Autism presents in many different ways. Asking for help can also be impossible.

    Maybe you can emphasise it is not a weakness r deficit, but an academic gift to think better. But it has done side effects that need to be thought about so you can make the most of it.

    I would guess she doesn't want to attract attention. Others have been bullied, so she doesn't want to be in that bucket. Being seen is a problem, trying to hide in plain sight is not so easy.

    Maybe she doesn't think eating is necessary. I used to think sleeping was an annoying waste of time so always controlled it.

    Perhaps it is a control thing. Maybe she thinks her periods will stop if she starves herself. That's something you would never openly say.

    Maybe it is a means to get attention or support, or she just wants to be left alone. Perhaps it is now a routine she doesn't want to stop.

    Maybe it is some trauma response and she can't say what happened.

Reply

  • I refused to accept the possibility I might be 30 years ago. I felt normal, I was good academically, I just didn't get other people, but I was quite bright so I thought it was that.

    I don't obviously stim, rock, make noises, have obvious learning difficulties. All my issues are more hidden and emotion/communication based and burnout related from pushing too hard. She probably has a mental image, and that is not going to be easily moved. Autism presents in many different ways. Asking for help can also be impossible.

    Maybe you can emphasise it is not a weakness r deficit, but an academic gift to think better. But it has done side effects that need to be thought about so you can make the most of it.

    I would guess she doesn't want to attract attention. Others have been bullied, so she doesn't want to be in that bucket. Being seen is a problem, trying to hide in plain sight is not so easy.

    Maybe she doesn't think eating is necessary. I used to think sleeping was an annoying waste of time so always controlled it.

    Perhaps it is a control thing. Maybe she thinks her periods will stop if she starves herself. That's something you would never openly say.

    Maybe it is a means to get attention or support, or she just wants to be left alone. Perhaps it is now a routine she doesn't want to stop.

    Maybe it is some trauma response and she can't say what happened.

Children
  • in reply to Stuart333

    I think me trying to make sense of it, or understanding why it started (the not eating and drinking) isnt helpful for her, she just needs me to be near her now, accept this is how things are and help her move forward when she is ready. But it is tiring as someone who likes to make sense of things and has made a living out of helping people to understand themselves! 

    I hope in time anything we do share about autism with her is taken in and heard. If it doesnt feel useful for her right now thats ok, I do feel its better she makes sense of herself, in her own way and own time and she is only 16 but as her mum it is difficult to be able to see things clearly from afar but not be able to navigate her feelings for her and only be alongside her. But that is parenting I guess, not being able to do it for her!