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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 just wanted to say hello and share that I have often felt your sense of social isolation and lack of support. I think my 16 year old transgender young person has been in autistic burnout for 5 years with significant mental health difficulties, hasn’t had an education and has been almost totally dependent on me (and my husband). I changed my job to work part time from home and have become very socially isolated, initially really struggling with my own mental health due to battles for an education and to lack of support and social connection.

    And at last things seem to be getting a little better. Our child is well at home, and will engage in some activities (reading, writing, cooking) and will leave the house with a family member. They attend some alternative provision for a few hours a week and engage with a few other young people. I am able to go out for a walk or to an occasional local support group. I don’t know what the future will hold, but it has been very good to see some positive steps forward. I wish you and your daughter well.

Reply

  • I just wanted to say hello and share that I have often felt your sense of social isolation and lack of support. I think my 16 year old transgender young person has been in autistic burnout for 5 years with significant mental health difficulties, hasn’t had an education and has been almost totally dependent on me (and my husband). I changed my job to work part time from home and have become very socially isolated, initially really struggling with my own mental health due to battles for an education and to lack of support and social connection.

    And at last things seem to be getting a little better. Our child is well at home, and will engage in some activities (reading, writing, cooking) and will leave the house with a family member. They attend some alternative provision for a few hours a week and engage with a few other young people. I am able to go out for a walk or to an occasional local support group. I don’t know what the future will hold, but it has been very good to see some positive steps forward. I wish you and your daughter well.

Children
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