Is there any information or advice anywhere, on how to deal with family not supporting or understanding my troubles etc?
I feel like they are saying "okay its good you're getting help and we might think about letting you back in if we see an improvement ".
profdanger I dont have many other relationships and I lost 1 of my 2 best friends last August. I dont work due to fibromyalgia so that dosent help. I have 2 aunts but they don't understand things like autism, RSD etc. Ive struggled all my life with friendships.
lostmyway you're correct about hurting, it feels physical too at times.
Im not a perfect mum and probably never will be but it feels like I could fall off the earth and they wouldn't be bothered.
I know I have a lot of adjusting to do and finding coping strategies, especially for the RSD. What worries me is how do I show my adult children that I have changed, when that happens? Or will things just stay as they are now because my relationship with them is too broke?
You owe yourself a wonderful life, learning to understand yourself and on your terms and timeframe.
As you learn more about yourself through the assessment process, (whatever that feedback may be), you can use that insight to begin to adapt your World to better support yourself.
Change cannot happen all at once. Pacing yourself and being patient can feel frustrating and daunting. Many of us are here as testimony to the work put into that process offering us some benefits of outcome.
If people have supportive family members - that is all to the good. However, for many reasons, sometimes those we would have trusted to know and support us best ...may struggle to fully appreciate the effort and energy involved on our part as we work through it all.
If someone is Autistic, there may well be some other family members who are also neurodivergent (whether those people know it, or not). It doesn't matter whether those people are our age, older, or younger. If there are any other people in your family who simply feel less "hard work" to be around - maybe you can recharge yourself a bit in their company - it really doesn't matter about the activity, or none. Just to "be" in appropriate company is restful. I guess; it is about "connection".
It sounded like you feel your family might have been judging you (for what you could not reasonably have been aware of before), that they are expecting some sort of socially acceptable "fix" to occur (that is not what understanding, accepting and including Autism is about), and that there is a perceived element of conditional future welcome if you are deemed "better" at some stage (know that: you are already perfect - any changes you subsequently choose to explore are: first and foremost; for your benefit and ease).
I feel there is often a period of adjustment needed on both sides when people start to learn about their Autism. We don't know everything we might and not do our relatives and close friends / colleagues. Everyone of quality would want you to be healthy and happy. Anyone who cannot meet that benchmark may need educating and more careful handling via implementing some prudent boundaries. Not harsh "walls" and cutting people off / going "no contact" - but rather; worth seeing if learning to deploy some boundary techniques might help establish a new way forward (family dynamics can be complex things, a bit of trial and error might be necessary!).
For example, I have a relative who had become far, far, too accustomed to trading on my good auspices (aka get me running around doing their errands - irrespective of what was going on in my life at the time). You can imagine the type: only phones you when they want you to do something (doesn't even ask about your life ...just manages to weave into the conversation how you are going to be helpful to that person). Same person: apparently oblivious to the concept of reciprocating when the need was yours for a change. Post-diagnosis: I realised this situation needed a grown-up adjustment. Now, I don't mind, when I have the energy and I am doing something which might also be of use to them - sometimes being helpful. However, endlessly, running around, constantly at their beck and call - only to suit them - ...just not happening anymore (I owe it to myself to do better than that these days).
If I have understood correctly, that you are an Autistic parent - and there is any chance that one or more of your children might be Autistic - you might find this worth bookmarking for future reference (Parent To Parent Emotional Support Service Helpline - "Our focus is on emotional support and understanding what it is like for you as a parent. We offer empathy, understanding, and a safe space to talk through your feelings and experiences"):
https://www.autism.org.uk/advice-and-guidance/help-and-support/parent-to-parent-helpline
I am not sure if I have quite captured and responded to your individual situation - hopefully, if nothing else, you might feel a bit more as though other people have experienced some similar situations and that prioritising investing in yourself; can eventually aid some more sustainable "bridge building" with other relatives ...with you carefully retaining the rules and role of "toll keeper" - as you begin to better understand which engagement styles with people best supports you and your household's needs.
I think you're hurting more than you let on, and that "if we see improvement" line... it's like they're holding a door half-shut, waiting for you to perform.
It sucks. And yeah, it's not fair - recovery isn't a straight line, it's messy, quiet, sometimes invisible. But here's what I see: you're already doing the hard part. Getting help, showing up for yourself. That's not nothing.
They might never get it. And if they don't... you don't owe them your progress. You owe it to you. Keep going, - build your own safety net. Friends, therapy, even just quiet nights where no one's judging.
Good morning from America, Jude66!
I might be a little bit luckier with a bit more of a supportive network around me, but like you I am an Autistic parent, so I can appreciate the difficulties that come with that.
okay its good you're getting help and we might think about letting you back in if we see an improvement
Now I don’t know your situation well, but it sounds to me like you’re dealing with conditional love. And honestly? You don’t need that. If I were you, I’d lean in on other relationships that are more consistent. This could be friends, neighbors, church folk (if applicable), coworkers (if applicable), etc. Sometimes the best family you’ve got is the family you adopt.
It wasn’t easy for me, but when I recently moved to a new house I gave my number out to all of my next door neighbors. I figured I don’t want to solely rely on my parents/in-laws if trouble comes up; There might someday be a problem best helped by someone next door rather than a family member. For example, I once had to rush one of my kids to a hospital for an injury, and I had no choice at the time but to ask my mom for help to watch the other daughter. Now my mother holds that incident over my head. It would have been better if I had asked a neighbor for help, instead.
Hi Chloe
Thank you for the link, I'll take a look.
I've suffered with mental health for years, or so I thought. Now I do wonder if it could be due to the RSD. Im part way through an autism and adhd assessment so will have a clearer picture then. The person I'm seeing will hopefully be able to do some follow up work with me, rather having to start at the beginning with someone new.
Hello Jude66
I am sorry to hear that you don't feel you have the support and understanding from your family - that must be very difficult to manage and I hope our Community members are able to share their own experiences of this with you. You may find it useful to share some information from the NAS with your family, which may help them to better understand ways in which to accept and support you: https://www.autism.org.uk/advice-and-guidance/diagnosis/after-diagnosis/emotional-support-for-family-members-after-a-diagn
If you feel as though this is impacting your mental health and you need further support to cope, you can use our Autism Services Directory to find counsellors in your area. Mind also has information about finding a therapist or you can search on the British Association for Counselling and Psychotherapy’s website.
I hope this helps,
Chloe Mod
