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.

Pikl said:

I'm waiting for an NHS assessment as nobody believes my private one, apparently I show empathy.

It seems that they do not understand that autism as a spectrum condition involves lesser and greater extents of sense and sensibility ~ from the hypo to the hyper sensitive and everything in-between ~ whether that be in an empathic sense and or any other sense, and it also seems that they do not really comprehend that autistic people develop psychological and physiological health problems on account of not having been appropriately facilitated, identified or affirmed in regard to the particular uniqueness of ‘their’ autistic ‘individuality’ ~ either at school or also at work?

Pikl said:

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.

Monotone vocal interactions involving aptitudinal indifferences are though classic presentations of people experiencing depressive episodes or durations ~ where they feel ‘flat’ with a lack of emotional peaks, or that their ‘heart is not in it’ ~ i.e., not feeling emotionally committed to or engaged with others and or the events of life.

Was not your GP sent a copy of your diagnostic report to update your NHS records ~ as in with the NHS accepting your diagnosis from a qualified psychologist or psychiatrist, regardless of whether they are private or not?

Pikl said:

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.

If as it very much seems that you are somewhat overwhelmed and quite possibly caught up in a bit of negative feedback loop ~ getting progressively burnt out and therefore your restricted capacity to function diminished, it would not be much of a surprise.

Is work in itself proving to be particularly stressful, and or are you possibly going through a rough patch involving the diagnostic hangover ~ as normally lasts about four and half years or so on average?

Pikl said:

I've never understood who I am and now that I have a chance, it feels like I'm not permitted.

One of the things with social camouflaging and personal masking ~ is that when it becomes too much and people can no longer pretend to be inferior, mediocre or superior with other people, they have to lean to adjust to the mysterious confusion of their indefatigable self ~ as which is enlightening and vitalising.

Artists and creatives of all sorts tend to have more of a relation with their indefatigable self ~ as is more the case to a greater extent for autistic and other neurologically divergent people.

Pikl said:

This makes me feel like I'm even more wrong and broken than I had come to believe.

Individuality is not a crime but natural by design ~ and as such you demonstrate nothing untoward about yourself really; other than not having been adequately facilitated, identified and affirmed ~ in accordance with who you are indefatigably.

Pikl said:

I'm sorry I'm moaning and venting.

Apology so not required ~ and we thank you for facilitating this linguistic group hug and vent session.

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 .

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

NAS84559 said:

Deepthought said:

the diagnostic hangover ~ as normally lasts about four and half years or so on average?

Thanks to everyone that’s commented on this thread. I am going through a really rough time at the moment like a lot of you and every person that has contributed to this thread has enlightened me. 

the above quote caught my attention. I am self diagnosed about a year and a half ago. Keep having thoughts that my life will never pick up again as what I saw before as social anxiety and something that can be worked on has now turned into something incurable.

Hi NAS84559 !

Anxiety disorders can be treated or managed with medication and or meditation ~ such as in the meditational sense learning to use presence of mind rather than so much disempowering and triggering oneself over recollections from the past and speculative projections about the future, and learning to use deep pelvic breathing to calm the body-mind relationship ~ rather than shallow diaphragmatic breathing that only at best provides about 40% oxygenation, being that the diaphragm is a cartilage fascia and not a muscle grouping as is the case with the pelvis ~ as works to draw the lungs down as they fill out and up with air.

If you are a diaphragmatic breather anxiety is more likely due in essence to asphyxiation, and an indicator of which aside from increased anxiety is the lowering and rising of the shoulders ~ and not so much or barely at all an expanding and contracting ribcage.

Also, people with autism do not necessarily suffer from anxiety disorders, although we are more likely to ~ given that many of us have not been appropriately facilitated, identified and affirmed as uniquely autistic individuals, but rather more as having been and or else living in fear of being socially ostracised, ridiculed and violated by way of verbal and physical violence, which most people in the shocked and stunned sense are consciously disassociated by during their upbringing, and as such have become ‘acclimatised’ and ‘hardened’ (in the psychic or psychological scar tissue sense) to what is obviously referred to as ‘normalise abuse’ as summarised with the link to the whole article as follows:

How to Stop Normalizing Abusive Behaviour

There are different types of abuse and abuse can come from any person and in any place. Abuse is not just something that occurs in romantic relationships. Abuse victims are often blamed for how they are treated. Abuse is also not taken seriously in many situations. Abuse may not be treated seriously because this type of violent and manipulative behavior has been normalized in many populations.

https://www.wikihow.life/Stop-Normalizing-Abusive-Behavior

NAS84559 said:

Is this just part of the diagnostic hangover?

To some extent yes, with the other extent being familial, educational, professional and philosophical (as including or excluding political and or theological) programming and conditioning and all that environmentally.

NAS84559 said:

Are there any articles or links anyone has so I can read more on this theory as it’s very interesting to me? 

A ‘diagnostic hangover’ is a descriptive analogy for the mental and emotional aftermath of getting a ‘Life Changing Diagnosis’ (LCD) ~ which in the case of autism as was reported by the BBC when one of their former science correspondents was diagnosed in 2021 as follows:

Autism: I was diagnosed at 60

The onset of the coronavirus pandemic took its toll on journalist Sue Nelson. Exhausted by covering the crisis, she received a life-changing diagnosis at 60 – she was autistic.

https://www.bbc.com/future/article/20220405-the-life-changing-diagnosis-of-autism-in-later-life

And another article from the BBC via Radio 4:

What it’s like to learn you’re autistic later in life.

Writer and performer Helen Keen found out she was autistic as an adult. In Broad Spectrum, she speaks to psychologists and people with autism to find out why diagnosis can take so long, what happens when it’s missed, and how discovering they’re autistic changes people’s lives. Here are a few things we've learned.

https://www.bbc.co.uk/programmes/articles/5ksLlzTkhpd8vtb76VYGCmg/what-it-s-like-to-learn-you-re-autistic-later-in-life

So with in the high costs of social camouflaging (physical pretences) and personal masking (verbal pretences) ~ as in “walking and talking” etcetera in socially normalised ways so as not to endanger one’s self socially or one’s position in the social or societal league tables economically ~ this is where the association between socialising and drinking too much becomes relevant regarding autistic people becoming progressively incapacitated and burning out, shutting down and or breaking down, as is summarised with the link to the whole paper as follows:

“Putting on My Best Normal”: Social Camouflaging in Adults With Autism Spectrum Conditions.

Camouflaging of autistic characteristics in social situations is hypothesised as a common social coping strategy for adults with autism spectrum conditions (ASC). Camouflaging may impact diagnosis, quality of life, and long-term outcomes, but little is known about it. This qualitative study examined camouflaging experiences in 92 adults with ASC, with questions focusing on the nature, motivations, and consequences of camouflaging. Thematic analysis was used to identify key elements of camouflaging, which informed development of a three-stage model of the camouflaging process. First, motivations for camouflaging included fitting in and increasing connections with others. Second, camouflaging itself comprised a combination of masking and compensation techniques. Third, short- and long-term consequences of camouflaging included exhaustion, challenging stereotypes, and threats to self-perception.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5509825/

One of the threats to self perception is having to mourn one’s old socially fostered and personally adopted sense of self, whilst also having to accept one’s new sense of self as has been one’s life-long sense of autistic embodiment.

So, in respect of mourning the old sense of self ~ it is summarised with a link to the whole article in this instance involving five stages:

The Five Stages of Grief That Come with a New Diagnosis.

Grief is an experience that can completely consume you mentally, physically, and emotionally — and it doesn’t just happen with the traditional sense of loss.

In fact, going through the stages of grief can happen as a result of any major life change.

For many disabled and chronically ill people, grieving your health after a new medical diagnosis can be an unexpected challenge. The type of grief that comes with chronic illness is complex, and the cycle can often restart each time a new issue presents itself.

https://www.healthline.com/health/chronic-illness/stages-of-grief-new-medical-diagnosis

And the seven stage model to accepting oneself is described as follows:

1. Disbelief & Shock

The initial reaction to loss includes a feeling of shock. Learning someone you love is gone creates numbness and fills a person with doubt. This is a form of emotional protection and can last for weeks. The time experienced often reflects the suddenness of the death, but there is no cookie-cutter recipe for grief. It’s not uncommon for someone to go through the shock phase throughout the duration of funeral preparation simply to get through the process.

2. Denial

The next stage of grief reflects the stubbornness of the human spirit. The mind goes into a state of denial to avoid the pain and reality of loss. A person can deny a loved one’s passing for weeks no matter the circumstances around the death. People experience other kinds of denial as well. For instance, a grieving person may deny that the loss affects them in a serious manner. Denial is a type of self-preservation much like a shock. A person’s experience with the stage helps shelter them from the eventual pain and ensuing stages of grief.

3. Guilt & Pain

As a person begins to feel the full realization of someone’s death, their numbness leads the way to extreme emotional pain and suffering. Guilt often accompanies this pain. A person may feel survivor’s guilt or a constant sense of “what might have been.” They may feel remorse over missed opportunities or things they did or didn’t do with their loved ones before their passing. It’s important to experience the full depth of pain when going through grief. Masking this stage with alcohol or drugs only makes things worse in the long run.

4. Bargaining

The negotiation phase occurs when a grieving person needs an emotional release from the shock and pain of loss. This phase involves wrestling with fate or “the powers that be” to try and make sense of loss. Of course, there is nothing one can do to bring someone back from the dead.

5. Anger

People going through this phase tend to lash out at the ones around them as an unwarranted reaction to the feelings of helplessness. One may place undue blame on someone else for the death. Grief strains the relationships of the living. To preserve these relationships, it’s imperative to find a way to release these extreme emotions in a healthy manner. Failing to do so may permanently damage ties you have with friends, family, or co-workers.

6. Depression

People who never experienced depression before have a hard time with this stage. Depression is all-encompassing and consumes your life. While it may seem extreme and worrying to go through a depression stage it is perfectly healthy to do so when grieving. After all the energy expelled and mental anguish of the other stages, depression gives you time to reflect and recover. Taking ample time to feel the loneliness and isolation make it easier to re-enter the world when you are ready.

When going through depression, avoid people who encourage you to “snap out of it.” For one, you cannot control your emotions that way. Instead, let yourself feel the despair and emptiness– just as you let yourself feel the other stages. This is a significant period of reflection and recuperation.

7. Acceptance

As a person adjusts to life without the person they grieve, the depression and other extreme feelings fade away. Common signs of acceptance include:

• Restructuring life without the person

• Cleaning out the loved one’s personal items

• Working on financial and social problems

• Seeking out old relationships and support systems

• Beginning new projects or hobbies

Acceptance does not equate to happiness. Rather, acceptance is the stage where a grieving person makes a conscious decision to move on and work towards a feeling of normality again. After a significant loss, a person rarely feels the same way they were before again. Acceptance occurs when a person stops looking towards the past and focuses on the future.

https://gatewaycounseling.com/7-stages-of-grief-explained/

Keep in mind that all these stages occur simultaneously to varying degrees and extents.   

And in terms of accepting and re-framing one's life-long understanding and comprehension of one's self:

Deepthought said:

I usually advise people to read the 'Complete Guide to Asperger’s Syndrome' ...by Tony Attwood, as it covers all the developmental stages of childhood into adulthood, and how the aspergenic body-mind relationship operates and is best facilitated ~ which very much helps to narratively reframe and comprehensively make sense of what went amiss socially, and how one can better negotiate or at least understand it all.

For those not into reading psychological text books, there is a simpler version titled ‘Asperger’s Syndrome: A Guide For Parents and Professionals’ ~ which is again by Tony Attwood, with the forward written by Lorna Wing who was the leading specialist who proposed and campaigned for autism to be recognised as a spectrum condition, and who also as a clinical psychiatrist and mother of an autistic daughter was one of the original founders of the National Autistic Society (NAS).

It is also or instead generally recommended that reading particularly successful autistic people’s biographies ~ such as John Elder Robison’s ‘Look Me in the Eye: My Life with Asperger's' and or Temple Grandin’s 'Thinking in Pictures: My Life with Autism', amongst quite a numeration of others.

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. 

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. 

I haven't accepted the diagnosis, simply because I'm told I can't be and that it was wrong. I'm left confused at how life is getting harder, confused that although autism makes sense to me, others don't see it. And confused at how I'm struggling with work.

Basically I'm just very confused.

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. 

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. 

I haven't accepted the diagnosis, simply because I'm told I can't be and that it was wrong. I'm left confused at how life is getting harder, confused that although autism makes sense to me, others don't see it. And confused at how I'm struggling with work.

Basically I'm just very confused.

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.

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 .