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Struggling. Can't find professional support.

Boo

Hello, I'm Boo. I have Autism and suffer with anxiety and depression. I've battled constantly with both since my teens, having to go to school seemed to trigger them to occur and ever since then it's been a near constant fight. Certain things trigger me and one is when my family get sick, it becomes a lot harder to cope with then. Especially the anxiety, I spend nearly all day anxious and on edge and it's exhausting. I'm always tired now and I have little energy to do the things I enjoy.

I wish there was more support for Autism. I looked around for Autism specialists but there's none in my area, from the reading I've done I don't think there is a lot of specialised support specifically for Autism for adults. The support all seems to be for children, which I'm glad about but I wish there was a little for adults as well. Life is hard and with the cost of living added with the already daily stress it's even worse.

My mum is sick right now with emphysema and is declining rapidly, it's awful to see and very upsetting as she can't do things she used to. It's horrible and this change is one I am struggle to cope with. Most things I brush off, I just keep going, mask and push on but this even my masking isn't really helping. I just feel tired and burned out all the time. I think I might be in burnout now as sometimes I'm so fatigued I can't stand for long, only rest helps but I don't feel fully rested after resting.

I was diagnosed with Autism over 10 years ago and since then I haven't really read up on it and I know hardly anything about it which is why perhaps I'm only finding out about a lot of it now.

Advice needed and welcome please.

  • in reply to Boo
    Boo said:
    I dread to think how I must sound

    Normal, and I really appreciate your secondary care comment.  Wishing you well. 

  • in reply to overwhelmed & underwhelmed ( O & U )

    I’m so sorry about your experience with secondary care. A lot of the time it feels like nobody cares and doesn’t want to help. More like trying to brush you off and give you to somebody else… That’s been my experience in the past. I had care assistant under mental health who did that, passed me from person to person like I was a parcel and I left feeling like I had been wasting their time.

    And I was also referred to an online group but the age was up to 20 I think and I am now 27.

    When you’re an adult you are very much left to fend for yourself which normally I can do more less but when I’m stressed and there’s big stuff going on in life I find it more difficult.

    That said I don’t just sit here and wallow in my own self pity. I’ve been trying to keep busy, I can’t change my mums health situation, I wish I could! But I can try to support her as best I can and I try to keep myself busy. I do a lot of creative stuff – writing, painting, drawing and I’ve begun card making. I’m not very good at any of it, but I enjoy it all the same.

    That’s what I find too – I have no one who really understands or gets what it’s like to be autistic. I have people around me who try offer support and they say they understand but it’s hard because I know they don’t. They’re just saying it to try to make me feel better.

    I sound ungrateful, I’m not, and I don’t mean to sound that way. I just get frustrated by everything and it brings out my self hatred grumpy side.

    Thanks yeah I was already looking at the advice and guidance the site offers. I should have mentioned that in my OP, I forgot, sorry. There’s a lot of good advice on the site, I had previously been here before because I was in touch with the National Autistic Society in 2016 or thereabouts but I didn’t see the online community, or the advice page at the time. Don’t know if it was even there at that point.

    Thank you for your time, support and help this morning. I dread to think how I must sound and look right now – but thank you, from my heart, it means a lot that you took the time to message.

    Boo x

  • Welcome to the forum.

    I totally agree with your experience.  

    I've recently had an encounter with secondary care ( I wont go into detail ) but basically they were trying to tell me they couldn't really help Autistic people much because they aren't as receptive to the treatments and courses they provide.  They tried to signpost me to a local voluntary organisation instead, but when I checked it only accepted people under 18, and those awaiting diagnosis.

    So many people come to this forum talking about isolation - not necessarily the feeling of being physically isolated - but feeling they have nobody on their wavelength to communicate with.  We have links and various suggestions on this site, but, again, as you infer - when you go out looking in many localities - there's simply nothing there.

    The purple bar at the top of this page does contain a load of information - Advice and Guidance - which you may well find useful though.  I wont send specific links, as I am sure you can navigate through yourself.  You can at least do some research into Autism itself, and it is interesting to come to this site to read the experiences of others - and to compare and to talk.

    I am also sorry to hear about your Mum and the strain it is causing.  I am pleased that coming here has given you opportunity to speak about it. 

    Take care.