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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

  • Hi and welcome to the community. I'm sorry to hear about your difficulties and I hope that this forum will help you feel less alone.

    I'm a female in my sixties on the spectrum and I do not have any medical or counselling training, but a couple of things went through my mind reading your post which I'd like to share with you. Even if it's no help, sometimes things others say can lead us to thinking in a different way about a situation.

    Listener2010 said:
    She received an autism diagnosis this year but rejects it. 

    This stood out to me. I wonder why she rejects it? 

    Listener2010 said:
    seems to be continually denying herself things

    Perhaps the two things are connected? I know you said that the eating issues started well before the autism diagnosis, but perhaps it's both to do with her trying to control her self image? It's likely that she has felt "different" for years and has had difficulties making friends. Maybe controlling her weight is something she started to try to fit in, if she knew other girls who expressed concerns about their weight, and it's now become an obsession. Perhaps her perceived self identity includes being being slim, doing well academically and not being autistic, so that she blends in more. Maybe denying herself things is because she feels bad about being "different".

    The thing that helped me accept myself as autistic was joining this forum. Reading the accounts of other autistic people was affirming and helped me gain confidence and not worry about what others think. Your daughter cannot join the community until she is 18, and if she is still rejecting an autistic identity she might not want to then. But perhaps there is a.way of helping her feel she's not alone without joining us on here? Are there any other autistic students at her college and if so, is there a way to get her to communicate with them?

    Autism often runs in families, so there's a chance that you or your husband, or both of you, are on the spectrum. Have either of you taken the AQ50 test? If you score high on that it's likely that you are autistic and maybe talking about that and how it affects you might help your daughter. Also if you are on the spectrum it might also help you.

    https://embrace-autism.com/autism-spectrum-quotient/

    I wish you well.

  • in reply to Lotus

    Thank you for taking the time to respond.

    Whe she received her diagnosis, the reason she felt so upset is that she perceived herself to not be like those who she has known to be autistic (this in a school environment, all girls, high achieving) where she experienced breaches of confidentiality and knew who was autistic by it popping up on the screen and surmising that those who were, were not liked by others. Unfortunately, she knows noone who is similar to her and being of an age were others find it hard to be vulnerable because most teens want to 'fit in' has led to her resisting the diagnosis. Her ED is not about weight and never has been, it is almost certainly a shut down to demands and being unable to process her feeling at the time.it started.

    She won't engage with the learning support team at college, will not accept provisions for support (stressed she does not need them) and therefore is still trying to fit in with those who really are not like her. She is exhausted from such high levels of masking and all we can do is gently guide her to what her body is trying to communicate nd how to manage her day to day.

    We havent taken a test, but we both know we are neurodiverse and, I can only speak for myself not my husband, know how this presents and affects me for having spent many years in therapy and self reflection. I am open and share this with my daughter when it is appropriate to but it appears as though her way of processing is more similar to her dads and possibly therefore, not so helpful for her. My son and I have similar processing and it often feels like a clash of autism and adhd in the house!

    I will take a look at the link, thank you for sharing.

  • in reply to Listener2010

    You are welcome - sorry that I couldn't really be of help. I hope that talking with us here gives you some outlet.

    Another new member has posted here about her 17 year old daughter, so maybe you could support each other a bit - I've tried to post a link to her thread below, so hope it works:

     Question re help with care and support for 17 year old ASD daughter 

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