My World Is Falling Apart

I don't have any suggestions, but I wanted to say I'm thinking of you. Please be kind to yourself!

Thank you Number 

Rest up Pikl.  Sending you calming vibes and knowledge that you're cared about.

Thank you. 

I'm sorry, I would respond better but just had panic attack and now exhausted. Thank you

39

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

I'm so sorry you're struggling. Please be kind to yourself though. It sounds like you're being really harsh on yourself. You have a lot going on and that's bound to affect you in big waves but you are right, there is a way through it, you just have to find it. And you will. Writing how you're feeling is a good start to feeling better about yourself and life.

I understand the feelings of being overwhelmed by life. It can be suffocating and a lonely place. Whenever you're feeling overwhelmed talk to us, or someone you feel comfortable with, it will help. 

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 .

Thank you so much. I really appreciate your kindness.

I'm sorry you're going through a scary time. And you're right, its about taking one day at a time. 

I wanted to say something comforting, instead I've just been staring at the screen. Trouble sleeping has stopped brain working.

Thank you again.

Pikl,

I see you.  

The positives of your post:

A wonderful friend of mine suggested posting here in the hopes that I can find some advice. 

You see wonder in your friend which means you can see good things even in this harsh time.

My thoughts are running so fast that I'm struggling to start. I'm struggling with everything right now, to the point living is just too overwhelming. I'm failing in my home life and failing in my work life. It feels too impossible to get through it, though I know there must be a way through, I'm just not able too see it. 

You recognise you are struggling and that your thoughts are racing and overwhelming so your trying to reach out here to help you.  This shows you care enough about you and are seeking a way through because you know you have gotten there before and this will pass no matter how painful.

I'm currently on the waiting list for talk therapy, for the 3rd time, this time to ascertain whether or not the pins and needles in my mouth and side of my face is due to anxiety. I can't talk to a GP anymore, I don't want medication it makes me feel really unwell. I don't want to be sent contact details of Samaritans, or any other groups, again. That's not helpful. I really don't like asking for help, I've been conditioned to believe that's wrong. And I'm falling down a black hole and can't see a way out.

I understand all of this.  I am the same in terms of not finding prescribed meds helpful or GPs because they are limited in what they can offer.  I know how scared you are for this to be happening again after trying talk therapy three times.  Keep trying things to get you through each day until eventually things start to feel less painful and scary.  You'll find that there are degrees of sadness that you can deal with as you are here.  I know that everything changes which's what keeps me trying.  I am going through a particularly scary funk but I owe it to myself and the people who know me to keep trying for a little longer to see what changes.

I've lost myself, not that I've ever really understood myself. I'm only eating once a day, a small meal, and I think it's my way of gaining some sense of control. 

I get what you mean about food.  Try to make sure it's a big meal so you are showing love to yourself through food.  I'm very controlling with my food too when everything else seems to be falling apart.  I get that feeling.  It's important though to recognise that restriction can worsen the tingling pins and needles (lack of certain vitamins) and energy to do stuff, this in turn leads to feeling worse and so the cycle continues.  I appreciate you post because now I realise what I can change to see if it makes a difference to me.  Eat more, get out in nature.  

I don't know what to do anymore. 

Keep posting here so you know you are not alone in your darkness.  I have a torch of kindness for you because you don't have it yourself right now.

I apologise for the very long and pointless post.

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

I'm also interested in art and in spirituality. Though when I'm in a low mood it all goes out the window.

At the moment I'm trying to resist a particular coping behaviour, though not sleeping properly isn't helping.

I really appreciate the virtual hugs.

I'm not able to throw myself into hobbies at the moment, I'm having to catch up on work not done. Which is why I'm feeling like a failure. 

A lot has gotten out of control and I don't know what to do.

I really hope you're feeling better.

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.

Pikl said:

I had no idea that you go through so much, and I think you're amazing! 

I don’t realise half the time that I am going through so much either, and ~ oh my ~ I do so very much apologise for being directionally " labyrinthian! " ;-)

If you can possibly excuse my linguistic humour attempt at playing on the word maze and being puzzled or else getting lost?

Pikl said:

I didn't believe that anyone could ever put up with me, and so to compensate them, I have done everything for them. My sister, who lives with us is the one who takes things off me, as I forget and struggle. 

My seizures mean that I can mistake weeks for days, weeks for months and months for years ~ such as visiting friends a day earlier or later than planned a week after the visit had been planned for, and so on and so fourth with the worst one involving me being three years late for my yearly medical review with my GP ~ which got seriously busy and confusing as I was in rather a mess to start with.

Pikl said:

I am a child pretending to be an adult and I don't want to play anymore, it's too hard. I just want to draw. 

The vast majority of adults pretend not to be children ~ given that pretending to be parent or authority figures involves the pretence itself maturing much more than the pretender ever does, and once the pretence can no longer be maintained during a breakdown, mid-life crises or in the latter years of life ~ the second childhood begins; with the first childhood developmentally continuing on as being freed from or less restricted by it’s previously inhibiting maturation pretence. Some of course developmentally unravel in terms of regressing progressively back through the traumatic durations of their life, back until even birth-trauma.

Autistic people mature more slowly due in part to a lack of according facilitation, identification and affirmation involving other autistic people’s sense and sensibilities ~ with ostracisation, ridicule and negation from non-autistic people being particularly obstructive and corruptive developmentally.

With growing research finding autism may be the result of foetal trauma due to the toxic effects heightened stress, depressive states and environmental pollution, the crystallisation of the neurological and physiological warps and wefts of the personality embodiment remain more integrally integrated with less chance of childhood regression and more chance of maturational development, however restricted or obstructed it have been. The fact that autistic people appear more youthful is thought to support the hypothesis of maturational perseverance. Of course ~ time will tell.

Pikl said:

I used to tell people that I had Peter Pan syndrome and can never grow up, it was the only thing I could think of to excuse my jumping, clapping and spinning on chairs at work. Now I can't do any of that and I had no idea it would impact me, as I didn't know why I did any of that. 

Autism involves the neurological and physiological system being in a constant state of freeze, fight or flight ~ hence the vitally narrowed and increased range of sense and sensibilities towards more objective focuses within the mind, or through the body ~ and with the instinctual fight or flight drives being adrenalized orientational and directional mobilisations, they are not particularly healthy to suppress by way of sitting or standing particularly still, more generally.

These adrenalized fight or flight mobilisations as ultimately being focused towards a singular point of attack or escape ~ can then be behaviourally sublimated by a singular activity referred to as ‘stimming’ ~ as can involve soft foam objects to squish to death in your fingers and have them expand back to shape again repeatedly, and finger held spinning gadgets to fulfil the orientational and directional stimulation requirements ~ or anything else under the descriptive heading of ‘stimming toys’.

In my case I have learnt deep and gentle heart centred pelvic breathing where I imagine as if my lungs are in my pelvis ~ and that with each in breath that I am as if sucking my feet to the floor, and with each out breath as if I am pushing roots down into the earth’s core. Shallow diaphragmatic breathing only provides about 40% oxygenation which is both anxiety inducing, and exhausting in terms of suffocating oneself, and seriously not a good way to minimise stress induced seizures.

Learning to habituate heart centred pelvic breathing took me about 25 years, and works very well as ‘stim’ for me.

Other stims I use as a helmet wearing cyclist queuing to be served in shops etcetera ~ is flexing my legs as if trying to stay limbered up, which no one pays any attention to as being out of place, or else I sway from side to side gently when I am more in need of a soothing vibe.