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

NAS72385

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. 

Parents

  • 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!

Reply

  • 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!

Children
  • 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.