The journey begins ... or continues ... articulating the rollercoaster that is my life

[NatBird]

much love :)

 

[somerandomguy]

Thinking of you Mums.

 

[Swift]

Thinking of you mums.
One trick I use with (stupid) doctors is ask them to do the test first and argue with me about the results afterwards.

Worked to great effect on a male Doctor who wouldn't organise a urine sample because apparently, my kidney infection that I'd been hospitalized for was "psychosomatic."
A bacterial infection.

I was like "dude, you may totally be right, but do the test and then we can argue about psychosomaticism.... "



Is there a reason your doc doesn't want to start the process of an Aspie diagnosis?
Just, there might be. They may think your weeks in hospital are better spent working on trauma, which is an idiotically one-eyed view if your Asperger's is part of it. Or, they may not have the expertise or experience and be afraid of cocking it up for you.


The other magic words with doctors are "what else could explain it? What could it be?"
Ie differential diagnosis but don't say that or they'll accuse you of having watched too many med shows.

Thirdly - does the medical establishment need to diagnose you in order for you to understand and accept yourself as having Asperger's and for that to be a useful way to look at things for you?

Like I'm not pro- self diagnosis by a long shot, but for something with so much grey as an understudied population and with other complicating factors, it may still be useful to run with it.

I have an Autistic friend (his preferred language) who is blind. He can't get a f*cking Autism diagnosis because he is blind. He's autistic, though, and quite proud of it.

But yeah. Sometimes the criteria are uselessly narrow and the doctors can't make a call because the criteria demand a high level of positive symptoms before they can say "yep this is what you have, 100%, definitely, we're sure."

I believe you, we all believe you. We see you.

Hang in there.

 

[mumstheword]

Thank you lovely friends :). I've been neglecting you because of the sheer taxation on my neural functioning that being in the hospital setting and group therapy has put me under.
My brain felt like it was about to explode and implode last night and I ended up ringing my guy and spewing my meltdown stress on to him. Needless to say, it didn't go down too well, but in the end, we got passed it.

Plus, the topic of the week is "grief and memory work and how to.manage and balance theses two components of recovery work". So I've been.a snivelling, wailing, sooking, crying mess for a lot of this week.

My grief is something I'm well in touch of,these days, despite my Spock-like propensity. I've been grieving the obvious; the trauma of my life'sblood, my babies, being ripped away from me and mentally "tortured" "gaslit" "criminally neglected" however you want to phrase it, and how we are irreconcilably damaged from it. The healing is under way, but it will never not be a damaging part of our past, complete with diagnosic evidence of one son, deemed "borderline personality disordered" and another "episodic psychotic", so there's that grief, and the other has to do with struggling with my autism all my life and having no assistance, no recognition, just exploitation, abuse and medical negligence perpetuated upon me, particularly mum, so hurt and angry she never even bothered to ask herself "why is my daughter so distressed, so 'cut off' so removed, so obsessive and resistant and "difficult"? Why would she just condemn me and shame me and bully me and reject me and neglect me? So much pain and struggle and aloneness and loneliness and helplessness and being trapped inside myself without anyone reaching in to help me out.


So yeah, grief, lots of it, in fact I'm crying again now.
As for diagnosis, I'm going to save my munmuns and go see Tony Attwood, one of our leading expects in Autism and particulary the "high functioning Aspergers" type of autism. I have his book.
I also want to get a proper diagnosis for my second born son. I know it's a trait, often particularly pronounced in us ND, but I very much like things to be put in their place, in my case the right diagnosis that fits, the right words to suit the sentiment, the truth of the matter, the logical and reasonable conclusion, given all the available evidence; that sort of thing.

Yeah my psych is not qualified, nor is it an easy undertaking to separate what is developmental trauma-induced symptoms from what might be ASD related symptoms and challenges. I am getting a handle on it, but communicating to the right authorities, is another thing.

 

[mumstheword]

Thinking of you mums.
One trick I use with (stupid) doctors is ask them to do the test first and argue with me about the results afterwards.

Worked to great effect on a male Doctor who wouldn't organise a urine sample because apparently, my kidney infection that I'd been hospitalized for was "psychosomatic."
A bacterial infection.

I was like "dude, you may totally be right, but do the test and then we can argue about psychosomaticism.... "



Is there a reason your doc doesn't want to start the process of an Aspie diagnosis?
Just, there might be. They may think your weeks in hospital are better spent working on trauma, which is an idiotically one-eyed view if your Asperger's is part of it. Or, they may not have the expertise or experience and be afraid of cocking it up for you.


The other magic words with doctors are "what else could explain it? What could it be?"
Ie differential diagnosis but don't say that or they'll accuse you of having watched too many med shows.

Thirdly - does the medical establishment need to diagnose you in order for you to understand and accept yourself as having Asperger's and for that to be a useful way to look at things for you?

Like I'm not pro- self diagnosis by a long shot, but for something with so much grey as an understudied population and with other complicating factors, it may still be useful to run with it.

I have an Autistic friend (his preferred language) who is blind. He can't get a f*cking Autism diagnosis because he is blind. He's autistic, though, and quite proud of it.

But yeah. Sometimes the criteria are uselessly narrow and the doctors can't make a call because the criteria demand a high level of positive symptoms before they can say "yep this is what you have, 100%, definitely, we're sure."

I believe you, we all believe you. We see you.

Hang in there.

Thank you again @Swift. I need that validation so much! My favourite nurse here validated me, but my pdoc/psychiatrist asked me, what I deem the stupidest question, as did her cohort, who she sent in on Thursday, to analyse me and "help her out" with me, and I can't get my head around it, especially coming from a psychiatrist, which was "Does it matter?" like, does it matter if I'm autistic?

I can't, for the life of me, figure out how a psychiatrist justifies, to themselves, asking "Does a right and accurate diagnosis matter?" ??????? What is their job worth if they don't see the value of a correct diagnosis?

To my Spocky-Aspie logical mind, I'm thinking "the diagnosis dictates and shapes the treatment and management so it's of immense importance to get it right" !!!!!!!
?????
Am I right?
How is that not obvious to two highly trained and mature psychiatrists?
Can't, for the life of me, get my head around it.

 

[Juso]

Maybe - but I am just guessing here - maybe they meant does it matter if you don't have a diagnosis because you already know you are autistic?
My old therapist did systemic therapy with me and never diagnosed her patients because she didn't think that this would help them. She used a different approach and it worked very well for me. I believe that everyone is different so if you feel you need a diagnosis don't give up yet! Maybe for you it has a lot to do with validation of your struggles? If so, you could maybe tell that your pdoc ?

 

[mumstheword]

Maybe - but I am just guessing here - maybe they meant does it matter if you don't have a diagnosis because you already know you are autistic?
My old therapist did systemic therapy with me and never diagnosed her patients because she didn't think that this would help them. She used a different approach and it worked very well for me. I believe that everyone is different so if you feel you need a diagnosis don't give up yet! Maybe for you it has a lot to do with validation of your struggles? If so, you could maybe tell that your pdoc ?

That's all very well with heaps of different kinds of therapists and psychologists, as they offer specific treatment and approaches and have a particularly domain of therapy that can be of assistance in all kinds of psychological difficulties, they tend to treat the symptoms rather than pathologise the person.

Psychiatry is, in my understanding, and certainly here in Australia, a type of medical science invested in the DSM manual, which fits diagnosis' to people, in order to indicate which sorts of treatments and approaches are suited or could help.

In Australia, diagnosis and surgery, tend to be the strong suites of medical practitioners; treatments, they are often more limited in. If they can't drug it, chop it, sew it, kill it, or label it, they often get a bit lost with how to treat things, as they don't often employ holistic approaches or multidiciplinary or mixed modality approaches.

Psychologists are another breed, entirely. They are not medicos, they are, in a sense, "soul scientists" or "soul doctors" as the psyche=soul or, alternatively psyche=ego or sense of self, so they aren't usually medically trained at all.

Diagnosis is not always their domain, although "Clinical psychologists" do diagnose and some do take it upon themselves to train to be diagnosicians. However psychiatrists, generally have, as part of their job description, a duty to offer a diagnosis or, I would have thought, a duty to refer a patient on to a specialist, if they don't have the expertise in that particular psychiatric domain.

But, I am learning, in regards to ASD, that certainly isn't the case.

Maybe it's because ASD diagnosis is so expensive here? Maybe they are reluctant because they feel for us under-financial sufferer's shallow pockets?
At any rate, it matters very much to me. I've suffered too long on the fringes, rejected by family, community and not having a clue as to why I'm the way I am. Trauma for me, I can overcome more easily than being an.outcast, with no consideration or understanding as to why I am so different than (al)most everybody.

Why I can talk to men more easily, with no sexual agenda on my part, in fact complete oblivion about that stuff (until fairly recently) and no way of figuring out how people operate, bar thousands of hours of rigorous study and intellectual cognition.

I want to be completely recognised that if I am flat, unemotional, in my own world, businesslike and preoccupied, it's not because I don't care about you, or am not interested in being your friend, I just don't have the neural wiring, that naturally operates with social protocols, unless I spend huge amounts of energy observing, copying, reminding myself, and, sometimes just going through the motions-I rarely can find the energy for this, these days) and that takes enormous energy that I sometimes don't have. So I NEED help and/or understanding and/or consideration and a label for that.

I care DEEPLY about people. I want inclusion, friends and ASSISTANCE to acheive what many other's take for granted.

I'm good at talking about my areas of expertise, which includes holistic approaches to mental health, recovery, peer support and (sometimes) empathetic listening. But "normal" social discourse and socialising for "fun" and popularity? Noooooooo, scary and out of my depth. Also learning new things? Scary and HARD. I NEED HELP!!!!

I want it officialised, so I don't sound like one of those easily-scoffed-at- internet- self-diagnosers.

I've too often been ridiculed, ignored, minimised, accused of being a hypochondriac, stigmatised, erroneously judged and relegated to the outer fringes of everywhere, except here.

Also, I want to give my family (sibs and mother) an undeniable reason why I can't relate to them, very easily at all, because I do love them and feel extreme guilt for shunning them, I just can't handle being around them, yet.

I need them to see me and have an inkling as to why I shun all family gatherings, because it's not just because my mum is a bit of a self-absorbed and sometimes mean poohead. My poor brain just has no idea how to relate to them - "Locked in love".
I need their support, understanding and consideration. I need the right diagnosis to validate my difficulties.

 

[Juso]

If they can't drug it, chop it, sew it, kill it, or label it, they often get a bit lost with how to treat things, as they don't often employ holistic approaches or multidiciplinary or mixed modality approaches.

Yes I am aware of that, before I started my psychology and neuroscience study program I did an internship in a psychiatry for mentally ill children and it was horrible there. Doesn't have to be this way everywhere, but the factory-like fashion of diagnosing and giving them medication was not helping at all, it just made everything worse. They sometimes left being even more mentally ill than before. That is why I preferred to not go by diagnoses, but that is just my personal preference.
Maybe your psychiatrist doesn't think you have ASD, I honestly don't know. Have you talked with him about that? About what he thinks? Did you ask why he thinks it doesn't matter? I can sense a great deal of frustration and helplessness, maybe it helps talking with him about it. If not, did you mean by "seeing Tony Attwood" that you will talk to him? Maybe that could help too?

 

[mumstheword]

My psych is a "she" snd she's quite good at what she does. I do like her.
I've tried to talk to her about it and, basically, have given up.

Yes Tony Attwood has a practice in Brisbane, which where I am right now. But, I will need to save my money to afford all the rigorous testing they do there.
I care about "certainties". I think it's a very common trait and attribute of HFA people. I care about "setting the record straight" where I can.
I want to be legitimised, which is not something I've had very much, certainly, not something I've felt very much, at all, in life.

This trauma stuff and the understanding and acceptance from people in the ptsd community, is inclusive and vindicating, but there are ways that I'm so Spocklike that are very different, I think, than what I've noticed of more NT-than-me peeps.

For instance, you don't really have the same strong and urgent need for correct diagnosis @Juso (and I've noticed that @Sietz thinks the same way), and maybe, don't really see that it should matter that much, whereas, to me, it's of the utmost importance.

For me the right terminology, the right words, are more important to me than having an emotional connection with my own mother.

Facts and certainties are "God's Shining Light".

Relating with other's is full of ambiguities that stress me beyond belief.

I feel a kind of universal benevolence, though. And yet it's tempered with a dispassionate and unemotional logic that craves understanding and the "making of sense".

I like to observe humans from a distance, they are fascinating, perplexing and astounding, but up close, they are too full of mystery and unknowns. The ones I find most pleasant to be around, are upfront, unambiguous, honest and straightforward, otherwise, I'm lost and have no idea how to proceed, so I flee. I'm not scared that they will hurt me, I'm running from my own lack of knowledge and lack of comfort with the mystery of the human in front of me and how to cope with that.
I even have no idea of what kind of person my own mother is, is she just traumatised? Does she dislike me? Is she afraid of me? Am I a nuisance? Does she really love me but is too damaged to show it? Does she resent me? Envy me?

How do you know when a person has consistently been dishonest and not straightforward with you?

I'm completely at a loss to move forward, when that is the case, they are lost to me.

Trauma is a certainty, it's fixable. Relating to humans? The uncertainty, not the risk of further trauma, but the general uncertainty, is beyond terrifying, it's debilitating.

 

[mumstheword]

When I say "trauma is fixable" I mean that I've demonstrated time and time again that I can rewire my brain and get past reliving and being debilitated by traumatic events. That may sound glib and I'm sorry if it does, but there are clear treatments and activities that rewire the brain and I've found great results from doing that stuff, like, really, really great results. Stuff that works a treat for me. And I think being Aspie is a bit of a plus, in some ways, when it comes to overcoming traumatic events, being super pragmatic and logical and having that separation of emotion from cognition, in some ways.

So that's why I do believe I'm a high functioning Autistic person first, who's suffered developmental and adult trauma-PTSD as a secondary comorbidity. It's not my main challenge, just an added bunch-of-shittiness thrown into the mix.

THAT'S why I want my autism recognised by my health professionals, it's a different kettle of fish to manage ASD and I want them to know and understand that.

 

[Juso]

My psych is a "she" snd she's quite good at what she does. I do like her.

Sorry that I misgendered her. So weird, I only remembered the word "pdoc" and basically assumed that she was male, maybe its because in german some words are feminine or masculine and for me pdoc sounds quite masculine?

I need the right diagnosis to validate my difficulties.

I want to be legitimised, which is not something I've had very much, certainly, not something I've felt very much, at all, in life.

I understand - like I said, I thought that it has a lot to do with validation you've been missing throughout your life.
As for the need to have a diagnose: I don't think that diagnoses are unnecessary, I know they help a great deal. Especially if you have felt alienated and misunderstood before. I guess I just assume that the human psyche is so very complex that I sometimes shy away from categorizations, even though they are often very helpful. And I do use categorizations everyday, especially for people around me, since it makes things less scarier.
Even though I am certainly not autistic I understand your craving for "making of sense" - I remember when I had to choose a higher level course back in school many years ago. Even though I wanted to take the course "pedagogy" my teacher back then told me to take "biology" because she knew I couldn't deal with fuzzy theories, I needed logic and clear and precice explanations about how things work. That is also why I love neuroscience. Its clear and precice and logical ? I can't work with ambiguity.

I've tried to talk to her about it and, basically, have given up.

I am sorry that feel like you have to give up. Don't be too hard on yourself, its really not that long ago that you discovered this about yourself, give it some time, I am sure something will eventually come up that will help you :hug:

 

[Freida]

Oh mums.... I know you hate it but this...

". So I've been.a snivelling, wailing, sooking, crying mess for a lot of this week.

Makes me happy for you! It means you are getting it out, processing, working thru, insert whatever words you like best here. You are allowing yourself to grieve, which is also a role model for me that grief is doable and can be felt and no bad things will happen. :hug:

A thought on the aspi diagnosis. As far as I know in the states your medical doctor diagnosis that and you go to therapy for coping skills. it's considered a medical issue instead of a psyche one. Maybe that's why the staff there is not willing to do it?