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.
Well said Tom. I have a history of mh professionals. From useless textbook counselling to intuitive and caring. I have the bpd handbook on my shelf for exactly the same reason. If I hadn't kept bumping into people and dropping things and a colleague commenting on it I would never have found out. I hadn't a clue about ND at all and yes it does explain my whole life. I'm hoping I can use the information to turn my life round but this part is a long process too.
I haven't at any point said or alluded to that a Member on this Forum who self - diagnosed should not be here. If that has ever come across then I apologise.
Part of me regrets starting this Thread. Perhaps if I had explained myself better from the outset then I would feel different. But through reading replies I've learnt too. And I really do thanks Members for their tolerance, patience.
But unfortunately I do still question self diagnosis for ASD and MH conditions. Doing so carries risks and may prevent someone getting the right type of professional help.
There may be a benefit to not seeking out a label at all.
For example: there have been sustained periods (years I mean) where I have felt at peace, healthy, productive etc
And I think that this mainly was due to environmental factors, finding the right match for me. I knew a bit about autism but hadn't for one moment thought it applied to me. In retrospect though - now I understand more, I can now see how I'd without realising, sought out, carved a lifestyle which suited me quite well.
Because I feel environment plays a huge factor, I'm trying to think of ways to achieve a formula which helps me again. No one can really do that for you. A good therapist, who understands you well, can help as a valuable sounding board and support.
Hello Quirkyfriend good to hear from you. You have had quite a day but Your evening sounds cosy. Good luck with getting the job.
It's Thursday evening here and we've just had fish fingers and hash browns for tea and I'm snuggled in bed with a cat.
SOs first week in a job after being unemployed for 3 years...no wonder we are tired, but on top of that our city is on a "boil notice" because of contamination of our water supply...so lots of little frustrations about disrupted routines.
Had a job interview today as an internal candidate. I'm figuring I scored 80%. So it's down to whether any other candidates score more. I'm tired though...more than I expected.
QuirkyFriend said:Labels are only a problem if they are an excuse
I don't have the assessment passport and would like to feel that I do not use my self diagnosis as an excuse but I certainly agree that diagnosis is a good framework to develop strategies going forward.
good to hear from you Quirky!
I've got mixed views on the benefits of NOT labelling.
SD16 was diagnosed in May this year but her Dad expressed concerns about ASD traits from when she was 6. Unfortunately through a mix of being devalued as a parent (despite 20 years experience as a MH researcher) and being in a culture which has swung towards "no labels", we've had a massive battle involving the family court to get SD16 assessed even though she requested it after identifying with ND traits at age 13.
What benefit does her label give? Educationally nothing more than her dyslexia diagnosis. It would get her some healthcare access of her mother would help her access it. Within the benefits system here disability payment is targeted e.g. we got SD20 funds to see a therapist, but if she stops or therapy comes to an end she loses that money. Getting permanent funding is rarer than hens teeth.
Thing is, this kid has struggled with being different and had we got the diagnosis earlier I think the family court would have been a lot less tolerant of the games played by her mother over education and healthcare...so early diagnosis would have given the family court a better understanding of this child rather than the assumptions that she was just an NT kid.
The downside of this diagnosis is her mother is starting to use it as an excuse for a range of things that could be dealt with if she bothered parenting...or encouraged.
I come from a family that uses diagnosis as a framework for adaptions rather than an excuse. Only family I know which has a quiet room on Christmas Day for any kid or adult at risk of a meltdown.
Labels are only a problem if they are an excuse
The articles offered personal opinions/ perspectives relevant to this thread. one from a father who has x3 autistic daughters (written 2012, why should that matter?) and the other was a guy with autism.
They are valid because are personal opinions. These aren't medical articles in The Lancet!
Malicious? When, where? A bully? ...
Instead I am tolerating coming under attack though for raising this topic.
Self diagnosing carries well known risks. Diagnosis can too.
Personally for me I'd have preferred sticking with psychoanalytical psychotherapy because the approach looks at the whole person, it's integrated and avoids labels.
Whereas an ASD diagnosis can leave you feeling high and dry because there's limited support resources to access. So I'm going to go back to the therapy route just described.
Forums like this one can be very helpful but are not a substitute for expert, professional help either.