Struggling with being in this 'middle ground' without any support

I don't even know where to start... I just started the diagnostic process and I'm feeling really confused and frustrated about it all, starting the referral process was arduous in itself and I have no idea what to expect now. It looks like the wait times in my area are about two years, I am really struggling to come to terms with waiting that long in Limbo.

The more I read about autism the more sure I am that it explains the challenges I've had in life but at the same time there is this doubt in the back of my mind. One day I feel really positive about it all and I think I don't need a diagnosis to make positive changes in my life. The next day I'm in a deep depression wondering if I'm clutching at straws and wondering if I'll wait two years only to find it isn't autism then I'm back to square one. I'm struggling with entertaining the possibility that I've wasted the last 25 years trying to force myself to appear normal, when actually I'm probably just wired differently.

It's been a long journey to even get here, I was diagnosed with CPTSD a few years ago and went through several years of trauma therapy. I thought that would be the end of it, that there was some chance that I might end up getting back to a 'normal' life. Some things got easier, the flashbacks and dissociation went and things got better but once the trauma was mostly out of the way the possibility of Autism popped up which explains the symptoms I'm left with.

Now I feel totally out on my own, I've been rejected by all the local mental health services now as having 'needs too complex'. I'm waiting on a referral to a specialised trauma centre in London, I've already been on that list for a year without any support. I have been trying to call the autistic society helpline but it's always busy. I've got in touch with an advocacy service to see it they can help me unfold this mess and get any support at all as I'm finding trying to navigate everything totally overwhelming.

My parents are in total denial about it and don't seem to be entertaining the possibility without a diagnosis, which is ridiculous as my brother is diagnosed with Autism and has high needs and my Dad has a significant amount of Autistic traits himself. None of my friends really seem to understand whats going on, I get why - how would they? Some seem to be avoiding me, others don't really know what to say. I can't even talk to my brother about it as he's convinced that I'm not Autistic. Who do I talk to about this? I can't keep it to myself, I feel like I might explode.

I just want to understand why life has been so difficult and what I can do to get the support I need to be able to work and support myself.

NAS72385 over 4 years ago in reply to Dawn

It’s ridiculous isn’t it, I am most of the way through a Psychology and Counselling degree because it was easier for me to get funding to do that and figure things out for myself than get any support from the NHS. I hope I can use what I’ve learned to help spare other people from going through all that. What you’ve said about being in someone else’s head is very true, it’s only really through my studies I realised just how many aspects of my experience are different to other people’s. I hope you manage to make sense of it all too!
NAS72385 over 4 years ago in reply to M

I can totally relate to everything you’re saying here, I have stopped talking to mine about it and won’t be sharing any updates unless they ask (they never do so little danger of that). I think building a support network of autistic people will work a lot better for me.
NAS72385 over 4 years ago in reply to Cristina

Thanks for to reply, I am having similar with regards to work history. I worked full time for 20 years and had management positions along with being very good at masking in one to one situations. What people don’t see are all the smoke and mirrors involved in me being able to do that kind of work and the support I needed in the background. I ended up getting a job with the NHS where I didn’t have my usual support and my usual strategies didn’t work and it all fell apart over 18 months and I’ve struggled to go back to work since. Exhausting is definitely the word!

I find what you say about finding your tribe encouraging, I’ve seen a lot of people say similar recently. I can’t imagine what dropping the mask feels like and socialising with people where I can be myself would be like but it does sound good.
M over 4 years ago

My family aren't supportive about this either. Me talking about it seems to make them angry and me then stressed. I think I've decided that even if I am autistic I'm not going to tell them. If they want to know then they can ask, but so far they haven't provided anything useful. All they've done is added to my own self-doubt, which I really don't need help with!!!
Cristina over 4 years ago

Hi. It must be really hard for you. I got my own diagnosis at aged 39 and I refused to do it through my local autism specialist services as they refused to believe that a woman who has a job, is independent, can make eye contact and can make a bit of small talk is actually autistic. I rely on masking to get by. It is exhausting. My mother who is a clinical psychologist was in denial too. I gave up explaining things to her and just decided to do what I felt was right to me. Stopped forcing myself to go to parties. Stopped worrying about people noticing my stims. I found people who understand me and are OK with whom I am. It was not overnight. I know it sounds a cliche, but finding your tribe is sth really powerful. I joined a group on FB called autism comedy club. Now, those guys understand my kind of humour and can laugh with me. Sth my family could never get. Good luck!
__Pathfinder__ over 4 years ago

Stop worrying about it. Thats the first thing. the fact you asked for assessment is a pretty good indicator that you probably have it. Secondly it runs in your family.

Let things happen as they happen. You can't control the process you can only take part in it.

Ignore your family as well on this topic. Don't bring it up, dont discuss it with them. You've identified them as causing you a fair amount of stress over the topic, so remove the stress by not getting into it with them. Also don't expect getting a positive diagnosis to change them. My family never really changed after mine. The thing you need to do is be yourself, not someone else. Don't try to conform and act a certain way, it isn't a good choice mentally and as you have discovered the stress it produces isn't conducive to a good life.

Support for pretty much anything is non-existent at present. I did CBT for a couple of things and it was mostly a waste of time. I got more out of just talking to someone than I got out of the rest of it.

Once lockdown is up, find a local autism group and join it. You need to talk to people who are going through similar. Asking any regular NT to understand what you are going through is like talking to a chimpanzee. They can understand basics, but beyond that they have no clue. Doctors not on the sprectrum are only a little better. Psychologists and Psychiatrists are the best in the NT category and if you find one who is on the spectrum they are the best and will help you navigate the chaos.

This place is also good for chatting and general light help, but real world interactions can't be beaten.

Stay strong and you will get the answers one way or the other.
Dawn over 4 years ago

I can sympathise with a lot of what you are saying about the system. If they can't fix it in 6 CBT sessions, there doesn't seem to be anything out there. I can't offer any advice, except to say that I'm questioning a lot of things in a similar way too.

The trouble is, you can never be inside someone else's head to know exactly how or what you're seeing and feeling that might be different from others... My normality is MY normality. Other people's is THEIRS. But if you have family members with ASD... hang on in there. I hope someone can eventually make sense of it all for you and get you to the right place to move forward.