This week I finally went for assessment and the results are in. It's a yes.
I thought I'd be happy about it but now I'm not so sure. It's really positive that I finally make sense and at 27 that's a huge relief. It also really sucks to have somebody else tell you how inept you are at life and to have to explain the job losses, uni drop outs, relationship breakdowns and all the other negatives that inevitably come from nearly three decades of undiagnosed ASD. I thought I'd scrape through and be told something along the lines of 'mild difficulties,' but to hear 'obviously autistic' was not what I expected at all.
I'm wondering how everybody else reacted to diagnosis? Was it what you expected, and did you do anything to help you process the result? Thank you in advance.
Just coming to terms with it. Was diagnosed end of October. The psychiatrist diagnosed me (without saying) at the first meeting then within 2 hours at the second. Was happy to finally have the answers but the reality is sinking in now. My wellbeing officer said I must take some time to come to terms with the diagnosis. I feel like nobody knows what to do with me. This has been my life long experience and I thought the diagnosis would change all that and it has to some degree, the wellbeing officer is fantastic but she feels a bit out of her depth although she did take charge of the meeting at the end and is going to give me ongoing weekly support. I knew before the assessment that I was autistic but until I got the diagnosis, I guess I didn’t realise the impact of it. It’s been a roller coaster since diagnosis. I thought it would give my family answers for my behaviour etc but they don’t want to know and after yesterday’s episode, it seems I’m still the scape goat. I guess it’s early days.
Roller coaster sounds about right. I was sad to read that things didn't work out with your family, maybe they will process it with a bit of time as well? I haven't told mine yet and am a bit nervous about it, they didn't seem that interested when I mentioned the referral but a diagnosis is a bit different. I hope the weekly support helps you come to terms with things,
Thank you Patch. Just hearing the wellbeing officer tell me that I needed time to come to terms with the diagnosis was a huge help. I suppose I hadn’t really thought about it that way. I was just pleased to get the diagnosis, but as I have found out, it is life changing. As Starbuck said, it doesn’t change us as people, but it does change everything. For me, I see this as an opportunity to learn to create a life in which I don’t melt down, shut down and burn out on a regular basis. I want to learn when to push myself and when to rest. How much time to give to special interests etc and how much interaction with the outside world I can comfortably manage.
The biggest comfort I have gained so far, from having the support of the wellbeing officer, and I’ve only had one session with her, is that she is insistent that I have to take this slowly, step by step and that the first thing to do is to give myself time to come to terms with the diagnosis and all that that means.
My head tells me I should go go go and by the end of next week, I should have achieved all my goals. Other people also expect me to get back to work, get on with things and get over it. My heart and my body tells me to slow right down, be gentle with myself and enjoy each day now. And the wellbeing officer is giving me this message and not only that, is going to support me to do just that.
Things are also getting a little better with my parents as well. I decided that no matter what their reaction is, I’m going to be honest with them about what life is really like for me. So yesterday I went to see them and admitted that I’d been to the doctors and that I’d been suicidal and my dad was great.
He reminded me of how I love to travel and how I had wanted to walk the Pacific Crest Trail. He said I know you can do anything you put your mind to. He said out of everyone he knows, I’m the person who achieves whatever I put my mind to. He said you can get through this. Make walking the PCT my goal and step by step, work towards that. He said it will be great, I can walk it and send messages and pictures back so they can follow my journey. He is usually worried about me when I travel, but this time, after my Mum said it could be dangerous, he said, just getting out of bed can be dangerous. He said I have to do it. This kind of brought us a bit closer and it really is a great goal for me to aim for. The preparation will be great for me, it will get me back into walking but with an even greater interest. So things are looking up. The rest of the family who don’t want to know, well, there’s not a great deal I can do about that. As the wellbeing officer said, I need to look after myself and if their denial is causing me upset etc, then I need to put myself first and not keep putting myself in situations with them.
I see a light at the end of the tunnel.
This is great! Taking it slowly sounds like very good advice, I think I will listen to your wellbeing officer as well on this one. I look forward to a post someday about your experience walking the PCT :)
The wellbeing officer really has got me to give myself a break and really and truly give myself time to process the diagnosis etc and to come to terms with it and accept it. She’s the first person to tell me this and it’s very good advice.
I’ll do a blog as I’m walking the PCT, I’ll do little stop offs on the way when I pick up my supplies and keep you all informed :-) preparations will be starting soon!