Social isolation and lack of support

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!

  • I have lost connections

    You can make new ones here if you feel up to it - there are lots of discussions on the go both serious, technical and social so you can join in whenever you are up for it, post questions you want help with or just talk about stuff that interests you to share with others.

    We are a very welcoming community so you are most welcome here.

    Technically only those over 18 can join so your kids have a while to go before they are allowed, but you can always ask questions on their behalf or about them.

    There is a section here about eating disorders ( https://www.autism.org.uk/advice-and-guidance/topics/mental-health/eating-disorders ) in case there is anything you have not seen yet.

    She will not engage with support at college for social support. She will not engage with therapy at camhs. I

    Would she consider a personal therapist to speak to? This sort of 1-2-1 approach can sometimes build trust and help her find a way to start to help herself more.

    Getting her to change her approach to support can be really tricky with an autist as we are often very change averse.

    It does sound like you have your hands full.

    Do you know if one or both of her parents are neurodiverse? Autism is highly hereditary so there is a good chance one of the parents will be on the spectrum too. The reason I raise this is that if it could be you then understanding it will help build better coping mechanisms for you too.

  • Best Wishes - keep posting please

  • Thank you for taking the time to respond 

  • The one you have joined here is one  

    Hard tho' it is I suspect for you to share what you have I and others are listening.

    At present that is small support however I am hoping that even writing this helps you and advice will come that enables you and your family to be happier.

    You and your family have my love and best wishes and I think many others here are likely to feel the same way.