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
I had therapy for many years prior to my diagnosis and found it extremely helpful. It helped me to understand so much about my difficulties and my behaviours - especially in childhood. It also helped by giving me signposts... which I wanted, because I wanted to have a name. I didn't want a label, but I wanted a diagnosis so that I could get a proper and more rounded understanding. And why not? If someone is feeling lethargic a lot all of a sudden, and is going to the loo more times than usual, and has raging thirsts, they're going to want to know why. And if the diagnosis is diabetes, then they have something they can work with. They can make adjustments and get treatments. It doesn't meant they're going to define their lives by it necessarily, or walk around with the label 'diabetic.' They might use internet forums for fellow sufferers to share stories and get insights. It doesn't mean it's become an obsession. But anyone who gets a diagnosis of anything at all - from athlete's foot to cancer - is naturally going to take more of an interest in the subject and probably seek to find out more.
So... my therapist was great. It was the diagnosticians, the so-called mental health professionals, who let me down. In my experience, it seems that they always started from the assumption that you were either making things up or grossly exaggerating them. So, when I went to a psych with a list of symptoms which included incapacitating depression and anxiety, panic attacks, mood swings, a frequent and ongoing sense of dysphoria and 'emptiness', emotional instability, substance misuse, disturbed behaviour patterns in always dysfunctional relationships, and constant suicide ideation... and then got told 'I can tell from looking at you that you don't have a personality disorder'... well, I think I can be forgiven for thinking that these people might not be properly qualified to do the job. I might not have had their 'learned' understanding - but I knew what I went through from the inside. That's why, for a long time, I self-diagnosed with BPD. Because I needed something to help me to understand. I needed that context. Time and again I got referrals, time and again I was turned away. I was told that if I stopped drinking, all of my other symptoms would go away. It was a waste of time my arguing that I drank because of my symptoms (at the same time as acknowledging that it probably made them worse). I even sat down one day and started to write a journal of my days, my moods, my thoughts, my behaviours. Within 6 weeks, I had 75,000 words down. I turned it into a novel about a man trying to cope with mental illness in a world that didn't seem to care. Reading it now, 5 years down the line, one thing jumps out at me. It is a graphic account of living with ASC. I just didn't know it then. I actually gave a copy of that novel to the psych who diagnosed me. I told her that it was unelaborated. That each day recorded was each day as I lived it. She had no hesitation in making a diagnosis, based on both my testimonies in interviews, my test results... and my book.
Having my diagnosis has changed my life. My mental health has improved in many ways because now I have something that I can use to help me to understand things. Autism is a big thing in my life, I admit it. Because it explains my life. It's like the Turing machine that's broken the Enigma code of me, and enabled me to make sense, at long last, of the messages in my head.
And if I'd never managed to get that formal clinical diagnosis, would I now self-diagnose?
Absolutely.
Martian Tom said:included incapacitating depression and anxiety, panic attacks, mood swings, a frequent and ongoing sense of dysphoria and 'emptiness', emotional instability, substance misuse, disturbed behaviour patterns in always dysfunctional relationships, and constant suicide ideation..
Well that resonates!
I am sorry JEP as I am currently self diagnosed....and that isn't without having done a massive amount of reading and research first as well as introspective reflection. Having read a lot on the forum here about people's struggle to get referred, and go through the assessment process I don't think that I have the strength at present to go through all of that on my own....as I have no friends or family to support me and a disinterested partner.
i feel vulnerable at the moment as still processing everything and making connections in terms of where life has taken this 42 year old woman so far and a growing realisation that I shall continue to subsist in the above quoted bubble during the coming weeks and months until something hopefully shifts.
Yes, I feel an imposter here, and I apologise for that.
sorry
Please don't allow yourself to feel like an imposter.. ( says she who feels like a fraud)... we are so hard on ourselves. Like I said it's taken me years to get to this point. You identify with the traits and you are finding that you click with what people are saying on here. I think NT's probably wouldn't. Before I took courage to join in ( and that took months I was looking before and after my assessments) I relied heavily on websites, books and podcasts. I mainly listened to the adhd ones at first adhd experts podcast and ADHD support talk radio so they were very useful then I had a look around and found a couple of autism ones. And YouTube. they were my bubble but chatting to real people who understand.. invaluable so keep chatting!
That's a good point, Misfit. If I try discussing some of the things I talk about on here with anyone outside, the reaction is quite different. It either clearly does not compute, or some other reason is offered to explain it - such as 'maybe you have a thyroid problem.' No. I have an 'acceptance' problem - from other people! I've learned to shut up, really, and let them get on with it.