Published on 12, July, 2020
Hi,
I'm fairly new to the Forum. Apart from starting a previous Thread regarding 'Grief/ Trauma' have stayed in the background and reading many posts. What often strikes me is the level of self diagnosis. Sometimes it might feel, I get the sense of ASD but often I do not. It feels like something else.
I begin to wonder if ASD is a more acceptable label. Obviously I'm aware that this is a Spectrum and understand the level of challenges are extremely diverse. I also know that ASD can have secondary difficulties, for example anxiety and depression.
Sometimes though, reading through posts, I feel that some members of this Forum have a different set of challenges which possibly have nothing to do with ASD.
Overall I find an obsession with ASD and a lot of immediate validation.
There are threads about assessment and how the AQ test could be an indicator. How the GP won't listen etc
From what I read, there are a fair few Forum Members who have a lot of contact with mental health and social services. Often they have self diagnosed ASD too.
And possibly this raises questions?
ASD can have multiple secondary complications.
Personally I think a lot of the responses on this Forum do not have anything to do with ASD.
When you have ASD, live with this day and day out, it's only then you realise the true difference. It's very difficult indeed. Not something you can easily describe.
I feel this forum is attracting members who have read about autism. Members who have pre existing, diagnosed mental health problems, who want to call the whole thing autism.
JEP
Blimey! I'm certainly glad I wasn't involved in this. I can do without the stress.
I was misdiagnosed for years with MH problems. I was laughed out of court by my CMHT. Didn't matter that I'd tried suicide a few times and was lucky to survive my final attempt.
In the end - I diagnosed myself. Firstly, with BPD (the laughter from the CPN is still ringing in my ears over that one). Then with ASC. I had no choice, basically, because there was such a long time to wait before a formal diagnosis. I, though, had no doubt. And I was sick of being treated like an imbecile by supposed professionals.
Maybe this is why many people self-diagnose. Because it gives them a context that they can understand.
And no one else seems to effing listen to them.
Well... now I am diagnosed. My response? I effing told you so, you idiots!
Self-diagnosis, if it can help until something else is available, is certainly valid in that respect.
If anyone wants to disagree, fair enough. Lord knows, there's more than enough disagreement to go around for one thread!
Thank you Martian for making us feel less rejected. We will get less fragile I think and hope. This has seemed like a lovely safe place and I will be very sad if Elephant and others leave. 'ground control thanking Major Tom'
I appreciated reading your post Misfit61.
In some ways I might be feeling angry. Outside of this Forum I feel that i'm not supposed to speak on autism. More a case 'right you've got the diagnosis, we accept that, now let's move on'. This is my father's reaction at least.
I don't want my autism to become a huge feature either. Instead I'd like to find a way to have one informative discussion with my family - explain things to them, increase their awareness. Then we can move on!
In contrast, the subject is only about autism on the Forum. So for me it's going from one extreme to another.
Prior to my diagnosis I had psychoanalytical psychotherapy with a senior analyst who is also a psychiatrist. In some ways I wished that I had continued with this. No labels, no diagnosis's were made. I felt really heard and they got to know me well. I learnt about myself this way and gained valuable tools
We did not discuss autism. Or - there was some recognition, but no more than that.
I though then requested an ASD referral via the GP. And I regret doing so now. I didn't enjoy the assessment process at all. It felt linear, medical, quite narrow, selective. There wasn't an opportunity for them to get to know me. I almost felt as if I could influence the outcome through knowing so much about ASD. Apparently not I was told, but I'm still not sure
I'm not going to self diagnose again! It hasn't helped me really. But an analytical approach did -it was comprehensive.
But everyone is different, this is my personal experience only.
JEP said: I appreciated reading your post Misfit61. In some ways I might be feeling angry. Outside of this Forum I feel that i'm not supposed to speak on autism. More a case 'right you've got the diagnosis, we accept that, now let's move on'. This is my father's reaction at least. I don't want my autism to become a huge feature either. Instead I'd like to find a way to have one informative discussion with my family - explain things to them, increase their awareness. Then we can move on! In contrast, the subject is only about autism on the Forum. So for me it's going from one extreme to another. Prior to my diagnosis I had psychoanalytical psychotherapy with a senior analyst who is also a psychiatrist. In some ways I wished that I had continued with this. No labels, no diagnosis's were made. I felt really heard and they got to know me well. I learnt about myself this way and gained valuable tools We did not discuss autism. Or - there was some recognition, but no more than that. I though then requested an ASD referral via the GP. And I regret doing so now. I didn't enjoy the assessment process at all. It felt linear, medical, quite narrow, selective. There wasn't an opportunity for them to get to know me. I almost felt as if I could influence the outcome through knowing so much about ASD. Apparently not I was told, but I'm still not sure I'm not going to self diagnose again! It hasn't helped me really. But an analytical approach did -it was comprehensive. But everyone is different, this is my personal experience only.
JEP I understand where you are coming from. Since my diagnosis, my family have not wanted to talk about the matter even though I have tried to approach the subject lightly. Like you, I don't want it to dominate my life, but at the same time I would like to understand the matter with my family and move on.
I found the diagnosis process very traumatic and distressing and since having a diagnosis, although it has explained a lot, you are left high and dry with no support or guidance afterwards. You could argue that yes you are the same person as you always have been and in some ways that is good to know, however, it is a lot to take in and process, or at least that is what I found. Some support or guidance would have been nice as it would have helped in explaining to my partner and my boss at work, why I am the way I am sometimes and what can be done to minimise the downsides to having ASD.
I had extensive psychotherapy a number of years ago and found it very helpful. There were no labels or judgement and the psychotherapist was brilliant and really helped me to understand who I was and where I was making quite obvious (at least to everyone else, but me!) mistakes in life. This whole process improved my social skills and confidence.
I am glad I have a diagnosis as it at least confirms some things and puts my mind at rest over some problems I have failed to improve in myself - I will keep trying, but at least I know why I struggle! Despite this the diagnosis process isn't straightforward and needs to be addressed in my opinion to help those who need a diagnosis, but to also put the help and support in place both during and following the assessments regardless of the outcome.
There are some very lovely people here.
Good I hope you feel safe here too and join some of the other threads. It sounds like you have had and are going through a tough time like many of us.
I'm beginning to realise that the Forum is a safe place. You've helped me see that Misfit61, thank you
We use a lot of energy in our daily lives and even more when going through the health system for whatever reason. When we get the outcome it creates a mixture of responses and it is said many of us go through all the stages of grief. There is a post on this said much better than this. Relief, denial , guilt the whole lot. Again this is not easy to handle or explain when on the one hand it's all a bit confusing and left to manage and on the other you have dismissive attitude from family. And we do cope with these things differently as ND's. Which is why this is so important a bubble of safety if you like.
When I got to the 2nd opinion stage my assessments were with a female consultant psychiatrist (specialist ASD, ADHD). She was quite odd, very disorganised, unstructured - sometimes I was surprised that she even had matching shoes on.
Skipped from one subject to the next. If I looked at her, she looked at the ceiling. There was no rapport between us. But is a known expert in her field. I think she's on the Spectrum.
When she finally decided on the diagnosis kept saying to me ' good on you, well done for working this all out'. I thought previously that I'd feel relieved but when it happened I instead felt flat and had no questions (which is unlike me).
Yes I can agree with you on the family front.. almost worse now. And yes my first assessment was clinical textbook series of tests and didn't feel confident they had broad experience of adults or women I felt very uncomfortable. The second one couldn't have Ben more different. So I do understand about the contrast. I also understand the adjustment we make as we come to terms with it. You said you are 45.. that is a lot of years to not know.