Social isolation and lack of support

Thanks for the reassurance Listener2010 

Yep that job title and what it means to oneself to be "such and such"...  In context I reflect on why I became a therapist and want to help other people so much.  Seeking respect and acceptance after being "othered" for so long is in the list of answers - hehe as well as being a good person I hope!

You're not alone :-)

Do something nice for yourself for me please (oh god that might sound kinky)  _ I mean have a nice hot bath or read your favourite book or whatever...

You've done a load of good work with this thread :-)

I did not read it as pompous Phased, I resonated and heard what you were describing and it was the reason I trained as a therapist after working in environments were i was very unboundaried and always putting others needs first and became quite unwell. It can be so hard to recognise when our own needs addressing and is one of the reasons I have given up work and am caring for my daughter as I know I cannot emotionally, or practically, do both. But this is hard on my sense of self and self worth, especially when it is an isolating experience so I am grateful to have found this forum!

It is a tough balance to focus on my daughter and ensure I have what I need too to keep me healthy and happy.

re-reading that I wrote above it comes across as pompous and goodness knows what Listener2010 sorry! anyway following recent posts I totally get that it's not possible to wear 2 metaphorical hats at once and the supporting mum hat is absolutely the best!

Thank you

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!

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.

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 

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.

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.

There are the supporters then Listener2010 hehe told you there would be!

Levity aside (hope that was OK to do so!).

I am glad to learn that you have self-referred for parent to parent support.

Also good that you acknowledge your own stressors.

Speaking to you as a therapist and also in the context of hereditary conditions I am absolutely sure that you are very aware of how people mirror experiences and behaviours too.

I regret that in saying this it reminds me of how much stressors I experienced in childhood impacted my behaviour and also how those I demonstrated in adulthood impacted my children - and they still do.

So, I guess you know that how you are feeling is impacting others around you too.

Persuasive to think that what is the highest priority is help for your daughter. 

As you said you are the primary support network for your daughter and that is putting you under a lot of stress.

You have also made it clear that complex family dynamics have meant that the sort of support that humans have relied on for ever has been shall we say tricky for you?  Speaking personally my father suffered from mental illness throughout my childhood (my guess would be called PTSD and autism these days...  ) My wife also having very complex relationships with parents who died before our youngest 2 were born...

Luckily we had a maternal cousin who was a "grandparent" to our children and a "big sister" to my wife - symbolically as well as practically this was very important.

I have worked for over 25 years as a therapist and ignored my own mental health and well being for most of that time.  Now I am it's really tough to make headway.  Please don't let that be you too.

I hope that this community continues to help you.

I hope also that you are able find support and the equivalent of my wife's cousin or similar in your closer community too,

Healers need healing too.

Best Wishes

Thank you, it is very kind of you to take the tkme to respond. EDs really are a nightmare come true for me.

Thank you, I spotted this earlier, thank you for sharing x

Hi Iain,

Thank you for taking the time to respond. We have tried a personal therapist and, as a therapist myself, know how useful the right relationship and space can be but equally, I know from professional experience it is best when sought by the individual themselves rather than her feeling pushed into it by us or others which just leads to shut down. We are, of course, just in a holding place for now, but it is a lot to carry.

I suspect I am neurodiverse adhd leaning and my husband is most likely autistic/adhd. After many years learning about it, it is evident both of our families are too however it is complicated by my own mum being sectioned for many years for being 'bipolar' (it is clear to me she was not) but this has led to lots of trauma and ruptured relationships and messy family dynamics.

It is the most frustrating because I have had lots of therapy and trained as a therapist myself, I feel I cope very well day to day and am not anxious or depressed just simply very isolated due to the current situation and demands on my time for my daughter. Coping mechanisms that helped, such as walking, taking part in hobbies and groups are just no longer possible around her care. And now that work has gone, the interaction with the world has too. I am aware that without time for myself i will of course become burned out and at risk of depression and low self esteem but there is no solution to this at present.

My partner and I are open about suspecting we are neurodiverse but cannot afford a private diagnosis, which for us, would be to show solidarity with our daughter rather than needing for ourselves. My son is awaiting an adhd diagnosis and has been on the list many years. We are based in one of the worst areas for referrals, adults currently arent being referred. My son was referred at age 10 and the team have told me I am currently looking at an appointment when he is 17. It is talked about casually, and seriously, always from our own frame of reference (even my son (13) does) and we are careful not to make assumptions about my daughters experience of the world. Perhaps she sees us all and doesn't want to be like us!

Needless to say, whilst I expect this time is all about holding her until she feels safe in the world, the need to share how difficult it is to hold her alone with people who might understand is quite big. 

I have self referred for parent to parent support in the hope this will help and will take a look at the social forums for some interaction outside of the everyday. 

Thank you again,

Sorry for such a long post!

I just wanted to say you are an amazing human being, and that sounds like so much to cope with at the moment. I have kids too but I'm not having to deal with anything near what you are going through. ED's are the greatest fear for parents. 

Best wishes to you!

(Just editing to be relevant to your last post)

Hi Listener2010 , thank you for sharing with the online community. I’m sorry you’re feeling isolated, and I hope you find it helpful being part of the community. In addition to the responses you’ve already had, you may find it useful to have a look at out Parent to Parent Emotional Support Helpline: https://www.autism.org.uk/advice-and-guidance/help-and-support/parent-to-parent-helpline.

Best wishes,

Anna Mod

Listener2010 said:

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.

Listener2010 said:

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 Listener2010 

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.