My World Is Falling Apart

Hi, sorry to hear this. I don't have any advice, sadly, but please don't feel bad for posting here. This is definitely a safe space to voice these kind of thoughts. Most of us have experienced them at one time or another.

I agree with Ann about eating/nutrition. 

In terms of "failing," at work or at home, please be kind to yourself and remember you're autistic, and that makes these things much harder than for a neurotypical person. Please try to be kind to yourself, even if it's hard.

Thank you Luftmentsch. I've been in my current job for 5 years, 19 in a previous one, and I've never had to be so restrained behaviour wise. I'm waiting for an NHS assessment as nobody believes my private one, apparently I show empathy. So at work I'm awkward, weird and maybe a little too direct, and I'm not allowed to explain why. I had private done in the middle of a depressive episode and the report remarked that I had a monotone voice, which everyone knows I don't, so the diagnosis is not seen as credible. I understand the other reasons why I have to keep it secret. I'm having more and more responsibility taken from me at home, I forget to do important things and if I'm focused on drawing then that makes it harder. I've never understood who I am and now that I have a chance, it feels like I'm not permitted. This makes me feel like I'm even more wrong and broken than I had come to believe. I'm sorry I'm moaning and venting. I've lost what little sense of self I had, and I don't know what to do anymore. Again, I'm sorry for complaining,  everyone here has their struggles.

Thank you Luftmentsch. I've been in my current job for 5 years, 19 in a previous one, and I've never had to be so restrained behaviour wise. I'm waiting for an NHS assessment as nobody believes my private one, apparently I show empathy. So at work I'm awkward, weird and maybe a little too direct, and I'm not allowed to explain why. I had private done in the middle of a depressive episode and the report remarked that I had a monotone voice, which everyone knows I don't, so the diagnosis is not seen as credible. I understand the other reasons why I have to keep it secret. I'm having more and more responsibility taken from me at home, I forget to do important things and if I'm focused on drawing then that makes it harder. I've never understood who I am and now that I have a chance, it feels like I'm not permitted. This makes me feel like I'm even more wrong and broken than I had come to believe. I'm sorry I'm moaning and venting. I've lost what little sense of self I had, and I don't know what to do anymore. Again, I'm sorry for complaining,  everyone here has their struggles.

I seem to see faces well enough, but not apply any processing power to them.

I cannot visualise a person face. When I think of a person it seems I store them as a bunch of attributes and concepts and personality etc, but no real face.

When I read a book, I get to know the characters but never see them. I find the descriptive stuff worthy of skipping over after a while of it not working for me.

I Sperg said:

Deepthought said:

‘Prosopagnosia’

I have that!! Didn't realise it until I saw it in black and white, but suddenly it came clear..

Certain quizzical memories suddenly snapped into focus... 

I do love that fact that all those nasty little mysteries that have dogged me for a half century now get explained at last, post diagnosis.

Oh my whole physical life yes ~ that is so very much the case! Once diagnostically confirmed ~ the fields of research narrow and the broadness of other people’s research and findings intersect in just the most pertinent ways, which for me last month involved ‘schizophasia’ (disorganised wording or word salad) which as you and others may or may not recall ~ I explained in terms of symbolic representation involving my avatar and background images on the ‘Forum creative space' thread.

Do you get complete face-blur like a friend of mine, or are the facial sectors (eyes, nose, mouth etcetera) more segregated and disjointed in fragmented sense ~ which I get with images until they integrally come into focus?

I Sperg said:

Deepthought said:

‘Prosopagnosia’

I have that!! Didn't realise it until I saw it in black and white, but suddenly it came clear..

Certain quizzical memories suddenly snapped into focus... 

I do love that fact that all those nasty little mysteries that have dogged me for a half century now get explained at last, post diagnosis.

Oh my whole physical life yes ~ that is so very much the case! Once diagnostically confirmed ~ the fields of research narrow and the broadness of other people’s research and findings intersect in just the most pertinent ways, which for me last month involved ‘schizophasia’ (disorganised wording) which as you and others may or may not recall I explained in terms of symbolic representation involving my avatar and background image on the ‘Forum creative space’ thread.

Do you have the complete face-blur variety of Prosopagnosia like a friend of mine, or are the facial sectors (eyes, nose, mouth etcetera) more segregated and disjointed in the fragmented sense ~ which I get with images until they integrally come into focus?

I love the concept of synchronised mess unmaking, and disorganised heap escapology. That made me smile. 

I need to do something, and soon. I'm not sure how much more of my mess I can take anymore. 

Pikl said:

Thank you so much, as always Deepthought. Your help and guidance is truly appreciated. I'm a bit of a mess at the moment and I'm grateful to you for helping me pick up the pieces. 

Well as far getting in to and out of messes, and having to pick up pieces to do so, I think are we all quite experienced at that to one extent or also the other, and getting to share in our expertise is quite reassuring either way ~ and could perhaps lead to new pass times like synchronised mess unmaking, disorganised heap escapology and midden avoidance theory etcetera. >(Grinning Emoji)<

I didn't think I'd be able to smile today, but you made it happen. Thank you

Deepthought said:

‘Prosopagnosia’

I have that!! Didn't realise it until I saw it in black and white, but suddenly it came clear..

Certain quizzical memories suddenly snapped into focus... 

I do love that fact that all those nasty little mysteries that have dogged me for a half century now get explained at last, post diagnosis.

"Pikled mess".....that sounds like a delicious Eastern European savoury dessert ?! 

Keep smiling Pikl.

Thank you so much, as always Deepthought. Your help and guidance is truly appreciated. I'm a bit of a mess at the moment and I'm grateful to you for helping me pick up the pieces. 

Pikl said:

Thank you Deepthought.

I am always glad to be of some service ~ plus it gives me good reason to provide information for everyone else too.

Pikl said:

I didn't consider contacting the psychiatrist and checking they were accepted by NHS for adults.

If the diagnosis is not accepted by the NHS, I would seriously consider getting a refund, whereas if your assessment was done in accordance with the NICE guidelines ~ which it blooming well should have been ~ you could just send a copy of your diagnostic report to your GP, and have them update your medical records ~ which is really really really important.

For the purpose of reassurance though, getting in touch with the psychiatrist first would obviously be a good idea, given that you would thereafter be able to proceed in confidence (or at least with increasing confidence) in respect of being treated as an autistic individual ~ with the rights of an autistic individual.

Pikl said:

I dont want to be a burden on the NHS.

You are so not a burden on the NHS Pikl ~ for just as Number stated, it is there to help us when we are not well, and to help us also keep well.

If anything ~ it really does appear that it is you who has been burdened with unfounded doubts about your diagnosis; due to other people’s ignorance about what autism describes in terms of it being a ‘spectrum condition’ ~ such as some experiencing empathy to overwhelming extents; all the way around to others having ‘Alexithymia’ which defines having difficulty or even no ability at all to relate with or identify emotions, which can be further compounded as a problem when ‘Prosopagnosia’ is the case, otherwise known as 'face-blindness' ~ so no clue as to whether someone is smiling, frowning or what!

You are 2% more Autistic than me.

That makes you the superior 'Sperg in this conversation!

What would you have me do, my queen? 

:c)

39

I do have a private diagnosis, I just need to accept it and stop needing reassurance. 

no worries. try this:

www.aspergerstestsite.com/

Hi I Sperg,  sorry I'm having trouble sleeping and have become a bit thick as a result. I didn't understand. 

Do the Asperger test site, test. It's further information, and you can do it right now, without asking anyone!

Once you know, you know. And then I promise it does become easier to manage, once you know what's really going on. 

The NHS is under huge strain, and of course that means the people who work under it are also strained. I just wanted reassurance is all, but maybe I can just accept the private diagnosis. It was by a well known place in London.

None of us want to be that "burden" Pikl.....but then again, the whole raison d'etre of the NHS is to help us with our health needs - so you should go for it.

I think we all just need to be calm and understanding of the horrendous pressure that the organisation is under - most especially when we are dealing with the individual humans that we encounter within it.

Thank you Deepthought. I didn't consider contacting the psychiatrist and checking they were accepted by NHS for adults. I dont want to be a burden on the NHS.

NAS84559 said:

Thanks that’s a great read I’m now gona read the links in there thanks so much 

I am so glad to have been of some service!

Pikl said:

Hi, I haven't shared the private report with GP, because when I was referred for NHS assessment it was rejected. I'm my area adults can only have an autism assessment if they have a low IQ. The GP and myself, with help from NAS contested the decision and funding was granted, so i dont want to risk jeopardizing getting an NHS assessment. 

In order for a private diagnosis to be accepted nationally by any service provider, employer and so on and so forth legally and officially; the National Institute for Clinical Care in ‘National Clinical Guidance 142’ covering ‘Autism recognition, referral, diagnose and management of adults on the autism spectrum’ states on page 24 of the 424 page document; under the heading of ‘2.5 Identification and Assessment’ that:

Diagnostic assessment, which in the UK uses ICD-10, is often within a multidisciplinary team but at minimum by a qualified clinician, usually a psychologist, psychiatrist or neurologist.

https://www.nice.org.uk/guidance/cg142/evidence/full-guideline-pdf-186587677

So providing you were assessed by a qualified psychologist, psychiatrist or neurologist ~ your diagnosis must be accepted legally and officially by anyone, and not just the NHS, bearing in mind that the NHS also states according to the Right to Choose option that:

If a GP needs to refer you for a physical or mental health condition, in most cases you have the legal right to choose the hospital or service you'd like to go to.

This will include many private hospitals if they provide services to the NHS and it does not cost the NHS any more than a referral to a standard NHS hospital.

https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

So in that you have already received and paid for (or paid for and received) an assessment and diagnosis, you could save the NHS however many thousands of pounds and make someone else’s wait for an assessment however much shorter, possibly.

Perhaps just check with your private service provider or practitioner that their diagnoses are accepted by the NHS, and then if this has been confirmed to you ~ you can confirm this with your GP, who has no right whatsoever to jeopardize your right to be assessed by a competent diagnostic team or specialist ~ particularly if your private diagnosis does not accord with the NICE guidelines, and or is not accepted by the NHS. Your diagnosis is though essential for public and private healthcare providers to follow due diligence and provide therefore best practice ~ in respect of your personal medical care.

Obviously ~ this is only my understanding and comprehension of things, and you are of course under no obligation to act upon any of it; in any way at all.

Pikl said:

Work is particularly difficult for me at present. In a previous job I could be more myself, and if anyone made comment then I would say I had Peter Pan syndrome and can't grow up. In my current job I have to be professional. I was there a year and a half before a depressive episode hit me for 19 months. I've been there 5 years. During the depression is when I had my private assessment. I don't k ow if it's connected, but coming out of that episode I feel like I left part of me behind, or I became somehow rewritten or unwritten. It's hard to describe. 

Yes, it is very much indeed connected ~ in that your old narrative sense of self has been unwritten by the diagnostic rewriting of your identity as being autistically embodied ~ in terms of being neurologically divergent, rather than being neurologically typical or even neurologically atypical.

Pikl said:

I haven't accepted the diagnosis, simply because I'm told I can't be and that it was wrong.

I was told that my diagnosis could not apply by a friend who dropped out of doing a psychology degree in the first half of the second year ~ and as if fully enthusiastic and excited I replied, “Oh wow ~ so you finally got more qualified than my diagnostician who is a psychological, psychiatric ‘and’ neurological specialist then!”

Some people just do not grasp that autism is a spectrum condition involving anything from the most visible of behavioural traits to the least visible ~ i.e., in terms of being an invisible condition; particularly when it comes to social camouflaging and personal masking ~ obviously, and of course not being qualified to make such an assessment ~ let alone refute a specialised diagnosis!!!

Basically it seems thar your diagnostic critic is or critics are more familiar with the character traits associated with Kanner’s Syndrome variants of autism ~ rather than those associated with the more socially functional variants of Asperger’s Syndrome, as were discussed in 2005 by J M S Pearce, in their Neurology, Neurosurgery and Psychiatry article in the British Medical Journal (BMJ):

Kanner’s infantile autism and Asperger’s syndrome

https://jnnp.bmj.com/content/76/2/205

Pikl said:

I'm left confused at how life is getting harder, confused that although autism makes sense to me, others don't see it.

Social camouflaging and personal masking along with having found your functional niche professionally may well be factors, involving also the thing with not having autism in the Kanner’s Syndrome sense, but rather Asperger’s Syndrome, now defined as type 1 autism, as just mentioned above.

Another factor of course is that some people do not like to re-evaluate their previously held judgemental opinions about others, such as was the case more-so with the male members in my family with me being supposedly; in the most summarised and polite sense ~ "lazy and selfish" ~ rather than as it turned easily exhausted and type 1 autistic.

Pikl said:

And confused at how I'm struggling with work.

If I am not mistaken and your employers are not accepting your diagnosis, which contravenes the Equality Act 2010, regarding discrimination at work ~ I am not at all surprised you are struggling, I mean talk about obstructive impedance to recovering from and adapting to a 'life-changing diagnosis' (as I previously mentioned to NAS84559  above).

Pikl said:

Basically I'm just very confused.

Well I really hope the above information reduces some of that confusion, or if not, my sincere apologies for adding to it Pikl .