Published on 12, July, 2020
Hey everyone
I received my ASD diagnosis nearly a year ago and have been struggling ever since to work out who I am and what this means.
I'm pretty late diagnosed (in my 30's) and didn't expect it. I've spent my life struggling with my mental health, first being referred to CAHMS at 8 years old. Where I was diagnosed over the years with OCD, ODD, GAD and selective mutism (which should've been a clue)
As an adult I was diagnosed with borderline personality disorder and bipolar disorder as well as all the anxiety/panic disorders. There's rarely been a time when I haven't been in therapy as an outpatient and at times an inpatient.
I started outpatient DBT last year. The therapist I have my 1 to 1's with asked, only a few sessions in, if I had ever been screened for ASD. It wasn't something I'd ever considered and assumed if I had it would've been picked up by now. I decided to do the assessment out of curiosity and a few weeks of lots of forms (for me and my parents), giving permission for my past medical notes to be looked through and a meeting with the clinical psychiatrist I received my ASD diagnosis. They've also rescinded my previous diagnoses and now it's ASD and cPTSD.
All my life I've thought that with the right combination of medication and therapy I'll get 'better' (that my symptoms will be manageable and I could be fully independent). Now I've been taken off most of the medication as I've been told it's not helpful, which makes sense as the right combination has never been found. Also I don't know what 'better' means anymore or what independence looks like. I do have to say the therapist I'm seeing is helping more than any others I have seen in the past, and is working to help me come to terms with it. The more I learn about ASD the more I can see it fits me, much more than any other diagnosis I've had.
It has left me very frustrated that this was not picked up sooner as looking back it was so very obvious. I understand that in the 90's girls were much less likely to be diagnosed with Autism, but still, over 25 years of contact with mental health services and no one mentioned it until now.
It's also left me with an even bigger sense of lack of self. I'm just not sure how to find 'me' under the years of (unconscious/forced) masking. So I thought I'd join a forum as a start
A bit about me: I have a degree in biomedical sciences and work part time in a lab, although I'm off work sick at the moment due to burnout. I play several instruments, mainly saxophone. I live with my parents, it's a constant goal to move into my own place, I have on a few occasions, even once moving to a different city for a job, but I always seem to end up back home.
And I think that's long enough
Look at it this way being diagnosed explains why you are who you are it changes nothing about who you are if anything it hopefully allows you to not have to over explain why you wear sunglasses or ear defenders or why you get so upset that your favourite event is cancelled
Someone once self diagnosed me with bpd ... I looked it up and I couldn't commect it to me so I looked up other things and I was like yes on x but no on y and a but asd does seem to fit
Thank you everyone for the amazing welcomes
And I absolutely appreciate the advice. Definitely given me a few things to think about and take onboard. I hardly expected a hello never mind this.
(I'll put in the disclaimer now that I'm awful at replying to messages, but that doesn't mean I don't appreciate it )
Welcome Faye!
Greetings Faye!
Welcome to the community! I can partially relate to your story. I hope you will find support here
Hi
Reading this I feel it’s a positive thing that you’ve finally got a diagnosis of Autism - because I think in time it will help you to live a life more attuned to your own true nature. I wasn’t diagnosed until fairly recently and I’m in my 50s - so you got there quicker than I did! One of my children was diagnosed at about 10 years old, and the other in his early twenties. It’s crazy really that so many people are diagnosed so late when it’s really not that complicated to identify autism (in my opinion anyway). My son had Selective Mutism all through school - and the ‘professionals’ in the education system didn’t seem able to identify his autism due to the fact they could only ‘see’ his Selective Mutism. Anyway - you have the diagnosis now - better late than never. I think getting the diagnosis as an adult quite naturally makes us re-evaluate our lives and question many things about who we are etc etc. I think this can be interesting and helpful for a while - but if we end up ruminating on these things too much it can be self destructive. You can’t change anything about your past - what matters is the here and now and living your life in a way that brings you fulfillment and happiness. What really matters most to you now? I think that in the West we concentrate too much on ‘identity’ - ultimately you’re you and what’s important is that you take care of yourself and your happiness on a day to day basis, and that you accept yourself and learn to feel good about who you are.
I’ve struggled with anxiety for decades, and also ptsd after serious illness about 3 years ago. The one time I tried medication it was a disaster for me - so I ruled that option out. I’ve had therapy for the ptsd and it helped. However - this past year I’ve been studying Zen Buddhism (the teachings of Thich Nhat Hanh who is the Zen Master who founded the monastery of Plum Village in France) in some depth and it’s this that has made the biggest difference for me. It’s helped to give me a completely different perspective on so many aspects of life and my anxiety has definitely reduced significantly. I feel better about myself and more able to deal with lots of situations. I feel a lot less fear, and I feel more peace. I’ve recent started Qigong exercises too - and that’s also helping.
So please don’t lose hope that there are ways to heal and improve our well being - even after years of struggle. It’s a matter of finding the things that work for you, and now you know you’re autistic that might help you to identify what you need for your own happiness, health and well being. It’s never too late to start working these things out.
Faye said:It's also left me with an even bigger sense of lack of self. I'm just not sure how to find 'me' under the years of (unconscious/forced) masking.
You are the same you that you have always been, but not you know what is causing you to experience things the way you are.
I would say the best approach is to think about each situation you are in and think if you are masking / scripting - much easier now you know what it is - and you can then take the time to think about what you really want to do.
It is a journey but then so it life - try to enjoy finding yourself under your defences but also try not to make everything in your life about your autism. I notice some people do this and become almost victims trapped by their autism when they are able to use the defence mechanisms they have always used to live a life as fulfulling as you were before, but not much more on your own terms.
Hi! I am also late diagnosed and in my 30s (I just got told I was autistic last week). I have been treated for anxiety and depression most of my adult life but nothing really worked, particularly any depression medication, so last year I came off everything and tried to look for other things that might be the cause of why I struggle so much. My (ADHD) friend suggested I look into autism a few years ago and...here I am.
I ended up back with my mum last year and started hypnotherapy to work on getting back to my own flat. Took almost a year to fully do it but I am happier now.
Biomedical sciences sounds so interesting! I am not a science person at all, I'm more into history and words. But I do find it fascinating.