Published on 12, July, 2020
Hi all,
I was diagnosed with ASD earlier in the year. Even though it is something I have thought and believed my whole life, I feel like the diagnosis has turned me upside down and I feel like I don't understand myself anymore. It felt like the assessor saw things in me that I don't see myself, but in the report she wrote, nothing of the sort was described. I received a post-diagnosis email but there wasn't much on there either. I just want someone to talk to who knows Autism well and I can organise my thoughts and learn more about myself. I have tried reading things online but it just doesn't seem to be helping. I want somebody to talk to about it all that knows what they are talking about. I just don't know where to turn.. I feel so isolated and alienated from myself, did anybody else have this experience? I'm from the East Midlands, can anybody signpost me to something that may help? I tried a peer mentoring-type service, but once I signed up I heard nothing more from them, I have sent follow up emails with no response also.. I have joined local groups on Facebook but it all seems to be child-centred and parents looking for school placements.
Any feedback would be greatly received, I don't want to keep feeling this way.
Hello BumbleBee
I have just seen this.
I only got my final diagnosis and report last week.
My initial feelings were being very happy.
Like you, it was then strange seeing myself laid bare in the report. Things that I'd never even noticed myself.
Then I was positive about the meeting at the time, but then ruminated on it all night and was very unhappy in the morning. I was subconsciously expecting it to be all positive - a bit like happy tales on TV when someone comes out as gay (I know this probably has downsides too in real life, but I mean the fantasy portrayal.) But the meeting, in retrospect felt more and more about ways of helping me get back in the neurotypical box rather than embracing my autistic identity!
I think that I am going to get some therapy about this. You have to be careful and like others have alluded here, you do not someone who uses neurotypical techniques that may not work as well for us.
Steph Jones "The Autistic Survival Guide to Therapy" is a good guide and should help me do a better job of finding a good therapist. (Steph is a therapist and is Autistic and has experienced all of the bad experiences about therapy in a neurotypical world and so this book can help us avoid some of the same pitfalls)
Good luck!
Hi Spikey, I'm sorry you have had similar experiences. I keep thinking about seeing a therapist but I can't afford the fees. Regards to the report though I thought mine was quite uninformative - it just stated the test that she did and that I passed it. There was no description of any traits that she saw or anything personal to me other than congrats you passed that one. But during the meeting she wrote lots of things down, and she asked so many questions but nothing was described in the report and that was what I was counting on, I wanted to see all of her thoughts and findings laid out on paper for me to read.
I had a couple of sheets of A4 paper basically confirming that I'm autistic, with a brief potted history of my life, some of which was wrong. I would of liked more information too, but even in 2012 there was little known about autism in women. My learning difficulties report done some 6 years earlier was pages and pages long, but it was all full of jargon that nobody understood. I'd love to get rediagnosed or something similar.
Mine were lovely too,
I could definitely give it a try, it wouldn't hurt! It just wasn't what I expected at all, and the lady was so lovely and patient with me as well.. I really thought I'd have gotten a bit more from it.
I do take comfort in that though, everybody I have spoken to here have all been so wonderful and supportive!
Oh dear! That sounds a bit unfair. Mine is a 29 page report! There are all sorts of observations and a very in depth breakdown of the ADOS-2 test too.
This is a real long shot, and I do not have high hopes of it working, but is it worth getting in touch with them saying that other autistics that you know got detailed long-form reports and that you are concerned that you didn't get something similar.
Having said all that, I do not know how useful mine will actually be.
All I can really say is that you are not alone, and maybe you can take a little comfort from that.