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.
Clearly this overall topic appears sensitive and has the capacity to create a defensive reaction from others.
Re: responses - there can be an aggressive tone. I've not been like that.
It's very typical Lonewarrior for some one with ASD to not let a subject rest and to become the main point of interest, to the exclusion of other things.
I read that you are at an assessment stage. This can take considerable time.
I've only looked at the first of those threads and all the comments. It is written by a NT mother of more severely impaired daughters. She has no authority or qualification to be passing judgement on the capacity of high functiong adults who are capable of self anaysis and and have average or above IQ to understand themseves.
And a big hug to you too!
Big hug!
Well said and good for you Lonewarrior.
Hi Lonewarrior,
I personally find both articles to be well written and interesting.
There is nothing radical about the way I am or in my approach to this topic.
And I don't know how you reach conclusions that the person Grit who wrote one of the articles and me are not on the spectrum.
) ( said:I don't actually believe you are on the autistic spectrum,I have seen no proof therefore your points are not valid.
Having a diagnosis, a label hasn't actually been of much benefit to me. But I am aware this can be helpful for others and I thought it would be for me too, but unfortunately not.
When you say you've seen no proof, what what were you looking for?
Dear jep This jabberwocky individual has an opinion,just that an opinion.likes to use less than polite language and is "WHO" ?
the "I am not the same as you came across at the end as being very successful,despite being told he would never succeed,I would question his diagnosis as he comes across as very articulate and has a loud outspoken voice? All the very things he states autistic people don't have? He has basically revealed himself to be all the things self diagnosed people do.
I thought this post had been nicely ended? You however seem to be very radical in your belief that undiagnosed or self diagnosed should not have a place here. Did you not read the comments from those who self diagnosed and later,much later after forcing the system finally got the validation. I don't actually believe you are on the autistic spectrum,I have seen no proof therefore your points are not valid.
oh and by the way I had my assessment last month so if it's ok with you I will continue to stay here.i will let you know the outcome.
I wasn't planning on posting today but have found a couple of interesting articles re: self diagnosis. In case useful here's the links:
http://autismjabberwocky.blogspot.co.uk/2012/10/whats-wrong-with-diagnosing-yourself.html
https://medium.com/@guy.t/you-and-i-are-not-the-same-autism-and-self-diagnosis-8bbc587f2e7d
JEP said: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.
One problem with that is that you also have to treat MH professionals' views for what they are i.e. mere opinions. The forum has many stories of first, second and third opinions that changed from one diagnostician to the next. There is no lab test like an XRay for ASD there can only ever be opinions.
Getting the right professional help is also a lottery. Just because you have a diagnosis does not mean that you will get the right help.
I self diagnosed before I got a "real" diagnosis. When I thought that I was affected I found that it explained an awful lot of stuff in my life. But beware, confirmation bias can kick in - particularly for those who are prone to black and white thinking! So, you have to treat self diagnosis with caution. The real diagnosis meant that I could stop worrying and doubting the underlying issue. But, someone who just has there own opinion may well be on the right track. Discussing our issues with people here may well develop people's insight and either confirm or deny someone's beliefs about themselves.
One of the big issues with autism is that the consequential issues (PTSD, depression, BPD etc) can throw up a cloud of symptoms that completely hide the underlying ASD. ASD is hard to diagnose, it is even harder when there are years of acquired behaviours that completely obscure the underlying causes. MH professionals are often no more able to unpick these layers than anyone else so it is quite possible for a person to believe that they have ASD whilst the professionals think something else.
One thing that has struck me is that we have different views of what our own autism is. It is a hard thing to define. It is hard to know where the boundaries are between the autism and the consequential issues and the borders with what is just normal behaviour (whatever that is)
The forum is a place to share opinions and JEP has just done that. Opinions generate further opinions in other people. There is no need to take offence. JEP is not taking over the forum and has just offered a view which generated some discussion.
Have you checked out the Utopia thread!? - it makes for good reading
Well you have all been really busy today,took me flipping ages to read all that lot.
Really happy this post was started jep! At first I was sad for fear of rejection. But after all the discussion and debate I am now very happy.
I am very surprised that we don't argue constantly as according to some beliefs we are not good at being flexible,we are way to factual and don't like change.complete nonesence.regardless of diagnosis we are all looking for answers.
It is a shame that anyone training to work with or diagnose autism isn't made to read this site and write out a full report on their findings. I like to think it would benefit them all!
Autopia,,,,,,now that's my top subject right now, I still believe if and it's a big if,we were all put on an island then after a period of adjustment we would all start to change,we would understand and respect each other like NT's don't! Take away the problem and there will be no problem! A big virtual hug to jep and all on here who contributed.(now you wouldn't see me saying or doing that in normal life). I AM FREE to express myself on here.no fear no worry.
Are you suggesting I stir my tea with a knife? Cheek! I use a comb, of course.
All 'round to my place for tea?
Don't forget to clean your blade first! (lol)....and be kind :)
That's a great topic for a thread. Now... I really must get a cup of tea! I'm parched
We did start a utopia thread that sort of fits!
Yes please!
Would it be an idea to close this topic now and move onto something else?
Start a new thread? But what? I was wondering on environments which may suit us and our experiences?
What an eloquent way to put it Tom .. spot on.
JEP I don't want to be on a forum where we cannot discuss difficult subjects. Just sorry it alarmed us at first. I think there are people like you who have found their environment suits them and content in their lives so though they have autism and whatever traits they don't need to be diagnosed or treated or supported and that's absolutely fine. And circumstances have changed that for you. And yes self diagnosis may be inaccurate or have risks attached and not receive appropriate help. And yes being too intent on something precludes us from doing other things at that time. It can take over or replace other things. Unfortunately mental health is only just reaching the media in a more tolerant way for example the adverts about someone returning to work with depression and still a lot of intolerance and fear abounds. And many people as you said have very rigid ideas and stereotypes of what ND's should be like. So there is an awful lot of ignorance on this subject. If you don't know what you need to know it's harder to find the answer because you don't know if there is a question or answer and don't know how to find out anyway. There will be thousands of people struggling wondering why they feel odd and out of place unaware of why. If you can find a good therapist or coach or support worker then that is excellent but it's like finding a needle in a haystack especially if you want one experienced with ND and unless you can go privately sessions are limited for all counselling whether with "counsellor" psychologist or psychiatrist. It would great to have such a person but again it takes a lot of effort, trial and error, mental and emotional energy to reach out to find someone and be quite brave ( which like Elephant in the room said I don't at the moment) to help to steer me on my way to more positive way of life. If you plant a flower in the right place, feed and water it just how it likes and all the conditions are good and you keep away from it things that will destroy it then it will flourish but otherwise it will end up mediocre or not blossom. But if it is flawed or a mutant strain it may need special attention to thrive but can be just as beautiful. Nature nurture.
I agree, JEP. For me, environment is all. If I can live my life as I choose to live it, in a way that minimises my anxieties and depressions, then I can feel more settled. Having a job where I'm respected for my condition, having a home where I'm not subjected to too much noise, being in a known and familiar environment, living in a way that I can continue with my routines and have the time to enjoy the things that really make my life worthwhile - that's everything to me. I have probably 85-90% of it now. I have a low income and have money anxieties - but I have an income, and am able to budget and know I can get by (even if it means no luxuries or holidays). My living accommodation could be better - but it serves for me and is reasonably comfortable. It could be a lot worse.
I also have a good acceptance of myself now. My diagnosis (it isn't my label or badge, but it's a good part of the sum total of me) has made me feel more settled in myself, and happier with the person I am. If others don't like that person, it no longer bothers me as much as it used to. I can live with it - and I'm the only person who has to live with it.
I think it's natural to question self-diagnosis in any sense. It's not professional medical opinion. Plus, many of us can be prone to hypochondria. We read stuff on the internet and suddenly we have any number of conditions! Doctors tend not to like people who use the internet to look things up. I even saw a physio once for a back condition and did some research beforehand so that I could give names to bones and muscles in the area to help her. She didn't like that one bit! 'It doesn't matter what it's called! Leave it to me!' Okay. Sorry. The thing is, though, it can be useful - if you're sensible and judicious (which many aren't, true). Many times, when I was nursing mum, I researched stuff which enabled me to help her more in the absence of information which should have been forthcoming from specialists. When she was hyperkalaemic, I found out what adjustments I needed to make to her diet to help her - and it did help her. I didn't get that information from anyone else. So - self-diagnosis of course can carry risks. But I haven't come across a single self-diagnosed person in this community whom I doubted had ASC. Most of what I've read has rung true for me in one way or another.
I don't think you should regret starting this thread. It's good to get a debate going - which is what's certainly happened, notwithstanding the fact that it's also upset some people. But as you've said yourself - you've learned from this thread. That's what it's all about, really - learning. Sometimes that learning process can be bumpy and difficult, and can raise tensions. But we're all individuals, and as such we're all going to react to things in different ways. One prime symptom of Asperger's is that we might say something that offends or upsets someone else, and we don't see why at first. I've done it a lot. All I ever ask is that people tell me when I make these mistakes. I've always contended that if someone does something wrong and no one ever tells them - even though it might be blatantly obvious to everyone else - then how are they to know?
Again... it's all part of the learning process. It doesn't mean you've done anything wrong.