The DSM and ICD with regards to Asperger’s and the Autistic Spectrum Disorder classification

This is from something I said in response to a post on Reddit in /r/aspergirls.  There is a lot more that I would like to say, and I know that this is very basic, but I wanted to post it because (to me, at least) it is a very interesting discussion starting point. Let me know any thoughts you might have in the comments!

The DSM and ICD are systems of diagnostic criteria for labelling various conditions for diagnosis (and other purposes, such as insurance etc); the ICD being the international system of labelling different medical conditions , and the DSM being the American system of labelling psychiatric and neurological conditions for diagnosis.

The current version of the ICD(the ICD 10), still lists Asperger’s as a linked condition to autism, but with a separate category of its own.

The DSM-5(the current version) has grouped what was formally known as Asperger’s into part of the Autistic spectrum, with differing levels of “severity” in various areas.

Although the DSM is American, it is an influential point of reference in many other countries, and in the case of your diagnosis, it may be more relevant to say ASD instead of Asperger’s, as psych and neuro are fast moving fields and the DSM has been more recently updated. However, there is controversy surrounding the new DSM(for various reasons, not just regarding autism), with many in the psychiatric field wishing to move away from it.

In the beta version of the ICD 11(the next version), you can also see this shift to a spectrum diagnosis, where(from my understanding) the state formally known as Asperger’s(ticking the boxes of social and communicative difficulties and rigid and repetitive behaviours, but with an average IQ or higher and little or no verbal difficulties) is treated as the “basic form”(for lack of a better turn of phrase) of autism (whereas, previously, a form that may have been labelled Kanner autism, or Classic autism was treated as the “standard form”, and Asperger’s was treated as “autism-lite”), with “add-on” descriptive features tailored for individuals (again, for lack of a better turn of phrase), such as being non-verbal, or a low IQ, or perhaps sensory and motor features.

It is easy to see the controversy that may arise, especially in changing the description of a population that is notoriously resistant to change. However, I personally welcome the shift, especially in the proposed version of the ICD (I have mixed feelings towards the DSM, especially due to the abstract “severity levels” which bring up objections similar to those regarding functioning labels), as it enables a more descriptive and accurate categorisation, which is more suited to the heterogeneous nature of how autism is expressed in people.

If I am wrong, however, I am glad to be corrected – it is my current obsession, and I am very happy to learn more.

Positivity is bullshit (at least for me right now)

I haven’t blogged in a while, and I want to write, but the only topics I can think of are about how unfair the world is, or other complaints.

I have been waking up late these past few days.   I might feel a little hungover when I wake up, but I haven’t drunk any alcohol for a good while now.  I go to sleep early, so it’s not that I’m sleep deprived.

The sun is shining, and I think, not about how nice and lovely the weather is, that the sky is blue, and there are beautiful Autumn colours that are juxtaposed against it, but about how the sunlight hurts my head behind my eyes, and makes me want to curl up in a ball under my duvet.

I can see how beautiful and amazing the world is, and I know these facts from years of practising “positive thinking”.  But I promised that this time, I would actually try to figure out what I’m feeling, rather than force a label on my emotions based on what I think  I should  be feeling.  Whilst the “Fake it ‘til you make it” approach might be helpful for some situations, I think that my personal history shows that it just masks my  problems, compounding them until it explodes.
I keep shouting at my boyfriend, because he is nice and tries to cheer me up by joking about things or showing me one of our cats on Skype (we are a long-distance couple), and I can’t handle it. I cry and shout more, because I am frustrated at myself even more for not reacting as he wants me to.  I should stop acting out, and smile and thank him for helping me, but my words fail me and I cry out, and now I’ve hurt him, and I’ve hurt myself even more.  He just wants to help.

I want to write positive things.  I want to write  authoritative and succinct ”10 ways to solve [insert life problem here]” posts,  or maybe “7 reasons why my life/the world/you/the system is awesome” or  “How I fixed my life in 10 easy steps”.  But I have no authority in that area.  I know all the standard advice, because trust me, I’ve consumed all the self-help books (I started from age 12), and read official guidelines on how to help yourself from PSAs and government health websites, and forced myself to smile, and even used to pray to a Christian God for a while.  I could regurgitate the reasons why the world is wonderful, tell you that everyone in my life is amazing, to see the beauty in the flaws, to feel the fear and do it anyway, or not to sweat the small stuff. 

I can tell you that it works for some people, and actually, at certain times, it works for me too.  Aphorisms, life hacks, mantras; they can all work.  But if I gave you that advice right now, it would be bullshit.  Right now, I can write about how things are unfair, and how I feel rubbish right now, and hope that the person who doesn’t need the sunshine and rainbow crap, but needs to feel empathised with the dead fish comes across this, and it’s helpful to them.  Apart from that, there’s not much I can do, apart from weather it, Stephen Fry style, tread the water in the pool, just hang on until it hopefully passes. Hopefully soon.

Diagnosis Diaries Part 3: The NICE guidelines and intro to the Triad of Impairments

I recently had a GP appointment, where I requested a referral for an Autism Spectrum diagnosis assessment.  Due to my need to prepare to minimise anxiety and just general interest in psychology and psychiatry, I think I over prepared a bit.  I’m summarising things that I read into small pieces.

The NICE (National Institute for Health and Care Excellence – the part of the Department of Health that provides the official national guidelines for clinical practice in the UK) guidelines state that GPs should consider onward referral to diagnostic services when a patient has:

one or more of the following:

  • persistent difficulties in social interaction,
  • persistent difficulties in social communication,
  • stereotypic (rigid and repetitive) behaviours, resistance to change or restricted interests

AND

one or more of the  following:

  • problems in obtaining or sustaining employment or education,
  • difficulties in initiating or sustaining social relationships,
  • previous or current contact with mental health or learning disability services,
  • a history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder or mental disorder

from 1.2.2 of  Autism: recognition, referral, diagnosis and management of adults on the autism spectrum

In many places(for parents, professionals, research, autistic people), the first half is often referred to as the Triad of Impairments, and when I first saw it (in an academic context) it didn’t occur to me that it might be personally relevant in any way.

More detail on the Triad of impairments from the NAS “Asperger syndrome; The triad of impairments” page. Click on the image for more.

For anyone reading this for themselves,  Jo Fox’ page on adult diagnosis of autism has been a fantastic guide (very thorough, which makes it comforting to read for me),  and as she recommends, going to the NAS’ description made it resonate more with me .

I also recommend Leigh Forbes and Joanna McKnight’s Life on the Spectrum, especially this page, which was eye-opening to me, as it suddenly became relevant to me personally, rather than another neuro/psych condition that I read about for funsies.

I think I’ll breakdown the triad a little more in more Diagnosis Diaries posts, because I have many thoughts on this.


If I go back to the NICE guidelines, and look at the second half:

  • problems in obtaining or sustaining employment or education,
    • At 14, I moved from my small, family-feel private school, to a competitive, large, super-selective school in a neighbouring town.  I hated it, and began getting ill, headaches, general malaise, depression, anxiety, and went to school less and less.
    • Whilst I achieved high enough grades through school, and started university with decent grades, I had a breakdown, and was frequently overwhelmed, although I couldn’t put my finger on what I was overwhelmed by exactly.  I ended up having to drop out of university after 5 years of trying to do a 3 year degree.  Finding assistance was in itself, a full time, exhausting and overwhelming obstacle, due to the social interactions.
    • I worked full time in a shop for 3 years.  It should have been an easy job, but it took everything I had to work there, and at the end of each day, I went to climb into my duvet cave to hide and recover.  Once a year, I quit, citing family issues as a reason, and spent a lot of time laying on the porch and reading at my mother’s house for 2 months, before going back and asking for my job back.
    • Other jobs I have had have been part-time, and I spend a lot of my free time “recovering”.
  • difficulties in initiating or sustaining social relationships,
    • Initiation: This whole process of reviewing my life for signs of autism has been really eye-opening.  I have really clear memories from as far back as 3 years old, but the first memory of initiating friendship I have is from when I was 18 years old.  All my friendships as a child were arranged by my mother, or facilitated by teachers (I was always the “new girl”, assigned to a peer who looked after me).  I think I can be a little better when drunk, because I forget that “who are you?” is a rude question, and other people tend to be more accomodating.
    • Sustaining:  This is an evident issue, because I have a tendency to become overwhelmed and become a hermit-like social recluse for months at a time.  I only have 2 friends, currently  – I talk to  B around once a month, and D, who calls me a lot, and I see once a year.  Logan is the person I talk to most, but even my therapist said that  he is exceptionally understanding, patient and sensitive to my needs, more so than most people, otherwise I think this relationship would be impossible.
  • previous or current contact with mental health or learning disability services,
    • Mental health – yes.  I was referred to CAMHS, as a 15 year old, but released into the wild, and then was back using IAPT services later.
  • a history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder) or mental disorder
    • Do they mean psychiatric? Depression, anxiety, panic, eating disorder.

I think these might apply. Oh dear.   I’m curious to hear about anyone else who was diagnosed as an adult (or even self-diagnosed) felt surprised at all the signs (not just traits, but the life events), and are now seeing their childhood through a completely different perspective.

Diagnosis diaries 2: I have been referred to the local NHS diagnostic services by my GP!

I will continue to outline the research I did in order to prepare to ask my GP for a referral, but I am a little behind schedule, because I got a little overwhelmed by a busy day going through London, but I’m almost recovered (in the mean time, I’ve participated in the #therapymeans as part of #autismmeans HT conversation on twitter- I’m continuously happily surprised by finding this community of people who “get me”.  I’m @hoistmeout).  

 

For the time being, this is a post appointment dump (like my post therapy brain dumps, they are uneditorialised, not stylised, just regurgitation of what happened) of my GP appointment.

 


 

The night before, I slept very little.  Logan, my very patient boyfriend, had mentioned a few of my traits and specific examples (I’ll elaborate more in a different post)  and offered to go through the points that I wanted to make in the morning when I woke up.   I am so grateful for this, and I benefited from this so much.  I won’t gush too much here, but I am very lucky to have someone who is so encouraging, who knows me well enough to see my weirder traits even if I try to hide them, and helps me accept them as he does.

 

My mother drops me off near the GP surgery.  As I walk, I rehearse my lines under my breath, I recall facts, numbers, statistics; this feels like a school exam.

 

I stare at the oranges and reds of a picture of a flower that I can see from the waiting room.  Two strangers talk to each other, even though they’ve never met, and I have an urge to correct one of them who thinks that food poisoning can’t kill you, but as I try to figure out how to do this, the door opens, and-
“Mrs PolarBear?”

 

This must be Dr P, the GP.  She must’ve mistaken me as my mother, who has come in a few times recently worrying about my sister.  My sister has recently been referred to CAMHS for suicidal ideation, gender dysphoria and self harm, and my mother and I think she might be on the spectrum.

 
 

The appointment

I go in with two objectives:
  1. to get a referral for a new therapist
  2. to get a referral to autism diagnostic services

 
 

1. Referral for a new therapist

 

I realise that I’ve been silent for a few seconds too long and staring at Dr P’s black polka-dotted dress (I’m wearing one too, so I wonder if she’d noticed it and if black polka dot dresses give off a certain impression to people), when she asks ,”what can I do for you today?”.

 

I’m glad that T has written a letter, because it enables me to refer to it, when I say that I want two referrals, one for talking therapy, and one for-

 

“Well, we can get that one out-of-the-way first” Before I get to my second point, Dr P interrupts me.  She gives me a number to call to talk to the local talking therapy services.

 

“uhh uhh um… thank you. I mean- yes. Well.” I’ve lost my flow because she’s interrupted my rehearsed script.   I’m glad that I’ve created a mental decision tree as well as a rehearsed script, because I remember to ask/shout, “It isn’t automatically CBT is it? ummmm….”

 

She seems a little taken aback, but the letter from T mentions that I haven’t responded favourably to it in the past, and she reassures me that there are other kinds of talking therapies that they offer, but that I would need to call them to ask about it.

 

She asks me if I’ve had bad experiences of it, and I, umm and ahh, tell her, actually, that it brings me to my second point.

 

2. Referral to the specialist diagnostic services

 

“Is it possible to have a referral to get a diagnosis for autism spectrum disorder? I know there is a specialist diagnostic service in [name of close town]” I spiel off my script, without a breath, so she doesn’t have a chance to interrupt this time. “I did a lot of research [I open my box file, full of notes, full of research, from blogs, official government bodies, peer-reviewed journals, and charities, healthcare providers. (pictured below)], and umm uhh, yeah.  please.”

 

wpid-20150930_120652-01.jpeg

 

Dr P: “If you could tell me about that, that would be good because I don’t know much about it. It’s something we normally diagnose in childhood.”

 

I am glad for my research now.  At the top of my box-file, I have some things I have printed for her.

 

These were:
  • a referral form for that specific diagnostic service (I googled “[my county name] county council autism diagnosis” and found the nearest diagnosis service near me. On their page, they had a referral form for the GP to fill in)
  • this information sheet (the link is a pdf download) from The National Autistic Society(NAS).

 

 

As I hand them over, I ramble on about how I don’t know what would be useful to her, and about how I realise it’s not normal for patients to do this much research, that I have to confess that I looked over the NICE guidelines, that I studied neuroscience at university, so I had a lot of resources available to me.  I let her know that I studied at her alma mater, in hope that it would convey that I wasn’t as stupid as I sounded then (no cohesive sentences, repeating myself, stuttering, fidgety flustering).

 

She asks me if I have finished my degree and graduated and what my plans are.  I am already half-prepared for this, as “problems in obtaining or sustaining employment or education” is one of the possible criteria for a referral according to the NICE guidelines.

 

“Well, you see, I didn’t.  I had to interrupt my course, and leave early. Regarding my plans, I don’t really know, and this is part of the problem.  I work part-time, in a shop for minimum wage, and I, uhh, I kind of have a difficulty with all of this.”

 

“What do you want to do?” Dr P gently asks.
“Well… I have no idea.  I would like to work somewhere, I’d like to be able to earn a full-time salary somewhere. Well, this is part of the reason I came here, because… because…”

 

I am distracted by some prescription forms that are on her desk, but get back on track.  I tell her that whatever I do, whether I take another qualification, or go to finish my degree, or even work in a corporation in an office, that I would like to ensure that I can have provisions from the outset, so I don’t waste people’s time or resources.  I tell her about how I had support for depression in the last year that I was at university, from the disability support service, but that in order to take advantage of it, I got overwhelmed, and that it took so much out of me in order to request it in the first place.  I described how I had to interrupt the course a few times and repeat years, because I couldn’t face lecture theatres.  That meetings to help me were draining too, even if the support advisors were great, because social interactions, even appointments, like this doctor’s appointment, are difficult, that as I spoke, I felt like I may burst into tears at any moment, that I had rehearsed this interaction, even if it didn’t sound like it.

 

She asked me if I found things more difficult as an adult more than when I was a child.  A cue for me to pull out the relatives questionnaire from the AAA.

 

She didn’t really read it, but I did flash it up (all highlighted and annotated – my mother filled it out for me the evening before), as I used it as a prop, to explain that it wasn’t really an issue when I was a child, my mother agrees that I was always “a bit different”, and that it’s a point of interest, this whole females on the spectrum thing, because often the autistic females who are verbal, and have no learning disabilities, are not referred as children, because they are often less “disruptive” in the classroom (which can be why boys are referred, or at least used to be the reason – now guidelines encourage health professionals to keep an eye out for signs in all infants so that early interventions can be administered). I’m starting to launch into the various works of researchers and clinicians who specialise in the female presentation of autism of Francesca Happe, of Judith Gould, and realise that I’ve been warned by Logan, by T, and by my mother about going off on this specific tangent.

 

“I’m so sorry, that wasn’t the question…. what was your question?”

 

Dr P: “Have things gotten harder for you as an adult?”

 

“Oh, uhh, yes, in the sense that things are  not laid out in front of me anymore; there is no certainty. Not just in terms of career, or life plans (this is definitely something I struggle with – that there are no set structured pathways), but also in day-to-day life, the analysis paralysis, the difficulties I have with infinite choices in the mundane and trivial.” I think about the mental decision tree that I prepared for this appointment and how I am terrified unless I have thought about all the different scenarios, and possible outcomes, in everyday interactions etc.

 

I tell her about how other people have specifically told me that they agree that I am not very good at being a grown up.  That I seem to be able to master specific skills (e.g. culinary skills, household skills, navigate around new places, picking up languages, etc), tick boxes of attainment (always having above average to full marks in academic grades, praise for papers that I write, a place at a good university), researching new information and gaining knowledge.  But somehow, being “put together” for extended periods of time and to function even at a basic level, always seemed near impossible.

 

And it’s not through lack of trying!  The university course was one way I tried to understand the human mind, but also my bulging bookshelves, and boxes of books that are about how to function as an adult, how to make conversation, not just the text books I had for academic neuroscience, but books on etiquette, classics like Dale Carnegie’s How to Win Friends and Influence People, relationship self-help books, and books on body language that I’ve been reading since I was a pre-teen (which isn’t normal, apparently).  That I used to observe conversations, eavesdrop stranger’s conversations, and repeat certain lines later, that I memorised lines and mannerisms from films and TV shows.

 

And still, it seems more difficult than it’s meant to be.

 

Dr P seems convinced.  She tells me that she wasn’t aware that this diagnostic service nearby was available, and it’s useful to know, just in case other patients asked. She starts saying that she’s happy for me to fill in the form, and she can sign and send it off.

 

I panic and tell her that I have a problem with this – there is a set of screening statements that I have to indicate if they fit or not, at the front and I didn’t know how to answer. Logan went through them with me, to let me know how I appeared from his end,  but I wanted to be sure that I was answering these correctly.  I started my rant about how it is cruel irony that the statements are vague, and rely on you to compare how your mind operates to others’, considering that two of the major characteristics is an impaired theory of mind and extreme attention to detail.  I’ve posted a photo below of the questions; if anyone else on the spectrum sees this, please tell me what you think about these statements.

 

wpid-20151001_124700.jpg

 

She stops me and tells me that we will fill it in together. I tell her that I can answer “yes” to a certain degree, but I know that in certain situations they do not.

 

Dr P: “Do you find social situations confusing?”

 

I don’t understand what confusing means in this context, and I need a definition of social situations.  Dr P circles “yes”, because constantly analysing the situation means that I don’t fully understand.

 

She gently talks to me and guides me through until I have ticked 9 out of 10 (“We don’t need to tick all of them.” She says.  I think “that’s not the point though”. I don’t want to game the system, I just want to know, to confirm my hypothesis that I fit the profile).

 

We talk about why I want the diagnosis again, that I would like access to local services that could help me, special therapies that might help, or any entitlements in the workplace, so that I can actually become a contributing member of society.  Even if these aren’t available, I can obviously do my own research and find self-help books and resources, but I would really like to have a confirmation that I am on the right path.

 

Dr P: “I think I’ll send a little letter as well, I just want to make sure I have a feel of things, are you on any medication?”

 

“I’m on escitalopram, 20mg”

 

“Do you think it’s helped at all? Was it originally prescribed for depression?”

 

I don’t know exactly how much it has helped, because I don’t know how much I can attribute to the medication.  I tell her I definitely feel better than before I took it, but they did increase my dosage last December, because I was very depressed.

 

“Has anyone else considered, professionally, that you may fit the diagnosis?”

 

“Apart from my therapist, no.”  I tell her about how we started looking deeper because my sister started struggling with her mental health recently and she fit more of the known signs as a child(the autistic savant-type that’s sometimes profiled in the media, the unusual manner of speaking, hyperlexia, meltdowns, inappropriate remarks, sensory sensitivities, unusual preferences in food), then Logan, had noted “darling, I don’t want to alarm you, but some of these sound a lot like you” when reading the details of the traits. That it was just another condition that I had to revise the main point for, to take an exam for university, that I was familiar with the DSM and ICD criteria, but it wasn’t until I started reading first hand accounts of autistic people on Twitter, Reddit, and other blogs, that I realised that they really did fit me.

 

 We talked a little more about what I was doing with my life at the moment – I don’t know, and if I couldn’t go and finish my university degree – no, it’s something that has been a hard decision to make, that took a long time to make, and it’s not something I can do right now.  That whilst it’s lovely that I’m living with my mother, that I’m being looked after, and fed, I feel like an absolute failure that I’ve gone back to living there, unemployed, at 26, when my peers have finished doctorates, getting married, having children, having successful careers.  I want to, at least, have some semblance of independence, of my own space, doesn’t have to be luxurious, even the smallest of studio flats will do.  

 

Dr P stops me to summarise that: I should call the talking therapy number, that I have a lot to sort out, but that I’m “on my way there”, that she’s going to send my referral form off.

 

I stare at her, again, a couple of seconds too long, before I realise that the appointment has ended.

 

“Take care of yourself,” I hear her say, as I grip the door handle on the way out. “And well done today.”

#HighFunctioningMeans

This part:

“High functioning is an adult graduate student hiding a meltdown in a bathroom because their officemate has a squeaky chair. It’s a prolific writer who has trouble keeping an apartment because they forget to pay their bills. It’s a call centre worker who goes home and sleeps for 12 hours straight because dealing with people is so exhausting and they don’t know why.”

Describes a lot of my life, so much. How it made no sense to me that I couldn’t sustain “being a grown up”, even though I was supposedly intelligent enough (a little above average, at least), and had studied enough.

ischemgeek

Intro: #HighFunctioningMeans – and its siblings, #LowFunctioningMeans and #FunctioningLabelsMean are trending on Twitter right now. For insight into what neurodiverse people really think of functioning labels, I suggest you check those tags out. I participated in the hashtag, and in my usual verbose way, I realized that I’d completely flood it if I posted all that’s in my brain, but I’m perseverating on it so I decided to turn it into a post. 

Content note: There are some offensive views I’ve written about in a first-person sense for reasons of satire. Content note for ableism and abuse. 

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Diagnosis Diaries Part 1: I don’t know if I am weird enough to be diagnoseable

Do my eccentricities tick enough boxes for me to get an Autistic Spectrum diagnosis? It’s a strange feeling to actually take note of my oddities, rather than try to conceal them, or make up excuses for them to fit in.

This reminds me of when I had an eating disorder in my teenage years (with a few minor relapses in my early twenties). I wanted help, so badly, but I had spent so much time disguising it, so much time justifying it to myself, that even though I had the opportunity to receive professional help for it (I had a therapist, but didn’t tell him about that aspect of my life), I instinctively shunned it, because I didn’t know how to ask for it, and I didn’t know if it was “serious enough” to warrant professional help (it was, but it was impossible for me to see that).

Research to verify information obsessively  and then checking over and over it from different sources, has always been my method, and I feel a sense of déjà vu when I am researching diagnostic criteria. Like guidelines for eating disorders, recent research and the law in various countries, differing health system guidelines and political shifts, mean that the diagnostic label, if I get one, might change, and hence the onward support and provisions I am entitled to. It is counter-productive, as the vague terms confound me more, and the checklist questions even vaguer. I know I should be working in the garden today as it is sunny outside (non-rainy days are gardening days – I grow my own vegetables, and there are often time sensitive tasks to accomplish, due to the seasons), but I am overwhelmed by the thoughts of my upcoming appointment and caught in the frantic web of introspective panic, of semantics, of trying too hard to read the legislation and guidelines in this country, of feeling like a fraud, and just of confusion; all my research of the diagnostic process only highlights the many cruel ironies of trying to seek help for something that some people call a social disability.

I know that to be referred/diagnosed I need to be able to answer questions and argue my case (I struggle with this). However, one possible trait is a lack of theory of mind, and many of the questions rely on you to make a comparison between how you think and how others think. I often read about how many autistic people require very specific instructions, and that the more literary autistics can be quite pedantic in lexical choice. Surely I am not the only person who really struggles with the meaning of the questions, not because the words or concepts are hard to understand, but frustrated due to the lack of specificity and strict parameters.

I have a GP appointment this Tuesday. Historically, I have been inept at utilising the time allocated in the doctors’ offices, either reading scribbles that I’d made beforehand (I don’t like unscripted interactions), or saying “yes”, “I don’t know” and “umm” randomly to all questions regardless of the context, even if they were the wrong answers, because I panicked about giving the right response. I have, however, been warned about bringing too much material into the appointment (as this has been my obsession for the past few months), so I am trying to distill it into a slimmer package.

These next few days, I plan to post things that I researched, and some of my answers to some online tests that I have found. Hopefully by posting this somewhere, I can start to make sense of this.

Therapy dump Thursday: A letter from my therapist to my GP

I currently see a therapist every week from the university counselling service. It’s coming to the end of our therapeutic relationship, and this is the second to last appointment with T, my therapist. These posts aren’t really editorialized or stylised, just brain dumps from my appointments.

 

I am clumsy

Even though I only have one session with T left after this, I still  have not figured out how to start them.
Today, I arrive a little late (I really hate being late) because I was changing my clothes.  On my one hour train ride into Central London for my appointment, I had apparently sat in some red fruity drink(I think it was Ribena) that someone had spilt on the seat, and had not noticed until standing up to get off the train.  I thought, oh, this train is a little cold, but dismissed that thought, because I often feel things that I don’t think I should make a fuss out of. The result was a sticky, cold, wet, red patch at the bottom of my dress behind my thighs.

 

Dr S, and how I am persistent

 

We briefly talk about my appointment with the psychiatrist, Dr S (which I will cover in a dedicated post, but I am still trying to process a lot of this), as T is the one who originally referred me to him.  We talk quite generally about the appointment, but something in particular that I needed to say out loud (so someone witnesses my response? I don’t know) was Dr S’s opinion that I had “given up too early”.

 

I started my Neuroscience degree in September 2010, and I was meant to graduate in 2013. I took years out, repeated some years etc.  This month, I finally gave up on my degree.   At my inability to explain why I had quit, Dr S lectured me, saying “you know, sometimes in life, you have to do things that you don’t see the point of.  You might get bored but you can’t just quit, you just have to be persistent and do some things.”

 

I spluttered about how I didn’t know about that, and then true to form, mumbled, searching for the right response and ending up just umming and ahing.

 

After I’d had some time to think about it, and in the safer space of therapy with T, I remembered the examples of how persistent and stupidly tenacious I could be:
  • My 6 year relationship with Jack.  Jack is a good guy, but the relationship should have ended 2 or 3 years earlier, and by the end, we were so mismatched, each of us damaging and resenting the other.
  • My 3 year stint in a clothes shop.  It was my first job, meant to only last me a couple of months before I went travelling on my gap year, but instead, I ended up trying to rise the corporate ladder (I have no fashion sense, and I am even more oblivious to occupational politics), and just ended up slightly above minimum wage, missing promotion after promotion.  I finally went to university after most of my peers had graduated. Whilst that job taught me a lot of life lessons, I really should have cut my losses and moved on.
  • Not seeking help for my mental health.   I guess this is the most relevant example, that I don’t really realise how fast I spiral down into a depression, I convince myself that I’m fine, that, I shouldn’t waste people’s time, that I can “get a grip”, and persist, and keep trying to live a normal life (this is distorted thinking due to depression).  I often only go to seek professional help when I am at the point of acting on some drastic plans.
There are many more that I can think of, but these three are the really significant ones that I can think of. They are times that I should have taken action more quickly to escape the situation.

 

I don’t know if “stubbornness” is the right word, because I don’t know if I actively went against anything.  It was like sitting in Ribena on the train, and whilst I had an inkling that something was up(“this train feels kinda cold”), my brain didn’t process the significance of this, until it was too late (my bottom and my dress was soaked in fruity smelling red stain). 

 

T notes that this could be due to the fact that I have a “very rich inner life”, which takes up a lot of my attention.  I also think it may be some kind of executive dysfunction where I have trouble prioritising, in this case, the sensory information to pay attention to.

 

A supportive letter

  • make sure they know about my history of suicide ideation/attempts,
  • tell them one of my prescription medication maybe wasn’t a good fit for me.
In this session, she goes over her draft of the letter with me, and I am so grateful.  As well as the above, she mentions
  • that she is not concerned about the risk at the moment (yay!),
  • but that considering my history, it is important to follow up therapy,
  • that I respond better with supportive talking therapy, rather than CBT,
  • that an ASD assessment might be useful for me (!!).

The last one, she adds because I stutter out that I am looking to ask for a referral to an autism specialist.  She tells me that she isn’t really meant to point to diagnostic labels in letters to GPs, but, considering that sometimes GPs can have an outdated view (I know of a GP dismissing the possibility that a teenage girl was on the spectrum because she wanted friends, and obviously she couldn’t be on the spectrum because autistic people don’t want social contact), T appreciates that sometimes they could use a nudge.

Some things that I will be using to prepare for my GP appointment

Therapy dump (from last week – oops): Talking in metaphors

I currently see a therapist every week from the university counselling service. It’s coming to the end of our therapeutic relationship, and I only have 2 (eek) more appointments with T, my therapist. These posts aren’t really editorialized or stylised, just brain dumps from my appointments.

I bounced into the room (a different one today. “More like a normal therapy room”, T says), and as per usual, T watches me fidget and fuss over my coat, my bag, etc.
“Sorry [blows air out], I feel kinda jittery today,” I announce. “Uhh, for like, uh, no reason, uhhh, jittery, uhhm, yeah.  It-it-it’s fine, I’m not panicky, just, uhh jittery.”

My words are tumbling out,  fluttering around, like the imaginary butterfly in my chest, erratically trying to escape.

“uhh, uuh, I – well, I actually, uhh I kinda….[deep breath] If I had to hazard a guess, I think it’s probably just a medication issue, because I was a bit, bad in being consistent with my medication last week and so I know that there’s a bit of a delay in the effect of discontinuation, and yeah so-“

“What medicatio-“

“Escitalopram – yeah I know, it’s important to take it consistently, and normally it’s fine, and I’m better now at remembering,” I steamroll over her, because I know she’s disapproving of the fact that I am bad at compliance with my prescription.  “I normally take it before I go to sleep, and just, one of the days I kinda fell asleep without taking it, and uhh, yeah, so uhh…these past few days… I’ve just been feeling….uh…”

 I’m slowing down now. The weird feeling is fine, because I can attribute it to something (i.e. a discontinuation blip from my medication).  I’m not sure what this feeling is called exactly, but to be honest, I’m not sure what I’m feeling most of the time. T asks if it’s also because our sessions are coming to an end, and I don’t like this idea, so I (realise only now that I’m typing this up that) ignore her question again by talking about my weird feeling last Friday.

Last Friday, I ran some errands in town, and then joined the local library.  As I perused the shelves of craft and hobby books, I noticed a change in my state of consciousness, a shift in mental gears, analogous to the shift in mental state when recreational drugs are used, or the depersonalisation and dissociation that happens sometimes during panic attacks. I tell T that it was fine because I quickly decided that it was due to the meds discontinuation, and that “I don’t know if it’s good or not, but it helps me in the moment because I know what the reason is”. I think I’m trying to say that it’s okay because it fits my normal mechanism for experiencing emotions, i.e.  normally, I realise my physiological arousal, then reason that I must be having a response to something, and then consciously cognitively label this emotion by logic and by recalling the events that I experienced and guessing which might have a significant impact on me (we think I’m a bit alexithymic, and Aspertypical pretty much sums how it is for me here).

So why was I jittery on the train?

T asks me about what happened on the train, what I was thinking about, or feeling, when I started feeling jittery and floaty.  I was writing this blog on drowning in a pool as depression analogy, that I was thinking about why people use stories and metaphors to explain the experience of psychiatric illnesses. I’m asked if drowning is something I dream about when I’m depressed, and I have no idea, this question stumps me for a little while.
“Yes? Maybe.  I don’t know.  Uhh, uhm, yeah, uhh…. This thing is more about the recovery process.” Apparently I’m really determined to be in charge of the topics of conversation today.  I ramble on about how the various stages of depression is experienced differently and depicted differently by different people, in different media etc, but T isn’t fooled; she stops me and asks me again: what was going on for me on the train?

My feet

Do I feel my feet on the ground? Focus your mind on the sensation of yourself being grounded, the feeling of your body on the chair (that I sit on in therapy), can you feel your toes, your heels in your shoes, on the ground?

Those are some of the points that we go through in our sessions, some mindfulness techniques (I think, anyway) that are designed to “bring me back into the room”, that T encourages me to try outside our sessions too.  T thinks that I may have had the weird feelings on the train because I was reminded of not being able to feel the ground firmly on my feet, both due to the fact that I was on the move literally, and also because of thinking about struggling to tread water in my pool analogy.
She praises me when I tell her that, on Friday, I was able to walk home because I focused on the physical sensation of putting one foot in front of the other – that it was tedious and tiring to do so, but that it worked.

On the same point about coping through noticing when things are a bit overwhelming, I told T that I stopped right in front of the ticket barriers for a few seconds, physically stopped, because I started to notice the physiological signs of arousal, and possible anxiety, and I’m not the best at multi-tasking! I felt a bit bad about that, because people (including me) find it annoying when someone suddenly stops in front of you, but T praised me for it, and reassured me that “there’s enough space, they can go around you.”

I like aminals 😀

So, all of this, I wanted to tell her, because  I had been calmed down by a dog.  I feel it is important to dedicate a blog post on animals, but basically, I like them, to the point where it really does improve my day when I come across them.  My cat, a fat, loyal amber-eyed grey fuzzy mass, is the mammal that I spend most of my time with.  Not my mother, nor Logan, nor a human friend, but a dog-like cat that I converse with (signs I may not be normal 1: on some days I meow more than I talk in a human language).

Today it was doubly so, because there were lots of police in the station when I got off the train (which, to me, is a comforting thing), and there was a golden retrievers police dog called Bruno that greeted people as they came down it (I know, it was probably sniffing for bombs or drugs or something). As soon as I saw the dog, I felt the dizzy jittery feeling subside a little.

Bruno the Police Dog

Bruno the Police Dog

Processing the end of therapy with T

 Am I worried about my sessions with T ending? At the time, in the therapy session, I didn’t know for sure if I was – I didn’t feel so, but looking at my behaviour, it looked like I was, i.e. researching and bookmarking other people’s experience of therapy, especially ending therapy, thinking over what Emily V Gordon says a Harmontown episode about people not turning up (trying to find the episode… I think it’s this one).  T reassures me that it is natural for me to worry, because it is in sessions with her that I have started learning who I am and learnt to keep and feel my feet on the ground, and that I felt safe there, and that it is going to be gone in a couple of weeks.  I tell her that I’m fine (at the time I really thought I was – it changed after my appointment with Dr S).

I mumble and struggle to find my words: ” I think umm maybe it’s like treading water, uhh, jittery…. In my analogy, this is…. uh… Basically it’s different to being in a deep wide ocean…..”

I’m glad when T intervenes and tells me that under all these abstractions, I am experiencing a lot of emotions.  I’m distracted and fiddling with my necklace (a silver chain with an assortment of colourful knitting stitch markers, paper clips and safety pins that I arrange and rearrange by type, colour, size when I’m anxious) and I ramble on more about police dogs and the different breeds, information that I’m regurgitating from the Stuff You Should Know podcast that I’d listened to (and a few other places – I can’t resist a good google time-sink).

When I start listening to what T is saying again, she reminds me that I’ve come a long way.  I now want to live (which I was unsure about before).  I can stop and think, even if it means literally physically stop in the throng of people, and let them walk around me, as I try to gauge what my mental status is at times of anxiety.  I think I feel fine, but I do think about the what if,  the what if I crash again, or start acting erratically again?

T reassures me that there will always be help available, and she tells me that she is willing to write a letter to my GP, disclosing some of the things that I had a hard time finding the words to (like some of my actions that seemed like I was planning suicide).   I know that she does this to make me feel cared, and, on the same lines, she says she will write to them about my previous attempts, that the plans often include prescription medication.  I am relieved that she offers this, because I wanted this, but didn’t know how to ask.  We discuss that it will be helpful to keep this in mind, because I act impulsively in times of overwhelming stress, just in case, in order to facilitate putting some safeguards in place.

I really like animals, apparently

 T asks, as always, if I have something else I need to talk about in the last 5 minutes of the appointment.  I ramble on, as always, about my cat.

wpid-received_10154275344794041.jpeg

He’s very smug, and knows what he wants.

  Other things to note from this session

  • Fiddled with my necklace, not with my scrunchies. This is relevant because whilst reflecting on my therapy sessions, I’ve noticed that I tend to necklace fiddle when I’m anxious, and screw up my scrunchies when I’m feeling more melancholy.
  • Talked in lots of metaphors. T thinks this might be a protective mechanism.
  • My mother thinks the idea of family therapy is a good idea, but we don’t know if it’ll be offered on the NHS.  T thinks this is really good that she’s interested, and if we can’t sort it out with CAMHS in our area, she might know someone who knows both Japanese and English cultures that could help.
  • I am relieved that T thinks my mother is caring and loving, because I never thought otherwise, and I get frustrated at therapists who try to get me to acknowledge childhood trauma from my mother being uncaring, because she really isn’t.  I’m relieved that T understands because she has the insight and open-mindedness, and also because when people don’t understand, it reminds me that I am bad at explaining situations.
  • We talk a bit about Dr S, and again about how T hopes that he will give me a referral to a mental health professional around my area (he didn’t).

So confused. Bouncing around mental health professionals again. (Plus a declaration)

I am well aware that I am behind on my therapy write up from this week, and I will also write up my session with Dr S at some point, but it feels too difficult right now.   I’ve been seeing Dr S, the university psychiatrist once a month since May.  He specialises in psychoanalysis, something the set off alarm bells in my head, but I went along.

The reason T, my therapist, referred me to him was to get a referral around my area. Today was my last session with him, as I will no longer be affiliated with the university. I think I need to think over my session with him, and look over my scribbled notes, but, the takeaway from the whole thing was:

“Go see your GP, and ask to be referred to counselling.”

I’m confused by this.  I was scared this was going to happen, that I was “too recovered” to be referred to any specialists, and that I was too highly functioning to require referral to services, but I convinced myself that I had been told that there would be referral, so I should trust that. Logan worried a few times that perhaps  Dr S didn’t have enough data points, because he is a great proponent of diagnosis by free association, but I reassured him that Dr S said that he was “getting to know you, so we can figure out a way to help you”. .I’m confused, and frustrated (when I meet my friend D in the afternoon, he points out that I seem angry and that I put down my glass rather aggressively).

I was confused by what I had been doing for the last few months in his office.  It takes me up to 2 hours each way to get there, and I am not a fan of going into London, because it can be busy and overwhelming.

I think it would have been better if I wasn’t told that this was meant to be leading up to another arrangement. I don’t know.

D says that I should make a fuss, but I don’t want to do that. What I am going to do is:

  1. Make a double appointment with my GP to request a referral to a counsellor.
  2. Also request a referral for an autism diagnosis.
  3. Consult the NAS about diagnosis advice.
  4. Make a list of traits that I have that fit the diagnosis.

I would like to see a specialist so I can finally rule out autism.  That’s not to say that I don’t want the diagnosis, I really  want that diagnosis, because it’s the one the makes the most sense to me, and I can finally a) belong to a group of similar minded people, b) have an explanation, even if is just for myself, about why I am the way I am, c) utilise advice intended for autistic people in safe knowledge that I am doing the right thing to help myself, d) have a valid excuse for obsessing over any information to do with autism.  I’m just really not hopeful that I’ll be diagnosed as such, because historically, I’ve been unsuccessful in communicating how I’m feeling, especially the difficulties that I experience, and I am in three populations that have difficulties in getting a diagnosis (i.e. being female, being an adult, and would be classified as “high functioning”).

These are not my words, but they may as well be.

These are not my words, but they may as well be.

BUT, I would like to proudly announce, that I have joined the National Autism Society, and will be reading any research and autism blogs I can get my hands on, and I have signed this open letter to the NHS and the UK government regarding autism diagnosis.

Long waiting times for autism diagnosis are pushing people to an avoidable crisis point. Email your MP today to encourage them to act on autism diagnosis waiting times.

Making sense of depression: Hoisting myself out of the pool

Why even think of analogies for depression?

The experience of depression can be so lonely, hopeless and I found it personally to restrict my communication with people.  I struggle to explain feelings, even my own to myself, and a significant part of recovery for me is feeling that people understand what I am going through.  Reading depictions of other people’s anxiety and depression and being able to relate to their stories helped me feel less alone.  Being able to use objects from everyday narrative, that people are familiar with, helped me convey some of the struggle, that I wasn’t being lazy to be malicious, that I wasn’t trying to bring the mood down for the sake of it.
There are so many fantastic analogies and metaphors that describe the experience of being depressed, each to  fulfill a different function:
  • The Black Dog, popularized by Winston Churchill, that reminds you that you are not your depression, it might be unruly and very attached to you, but that it can be tamed,
  • Allie Brosh(aka Hyperbole and a Half)‘s dead fish analogy, which helped me explain to people, that all I want is for them to acknowledge the problem, and that I want them to stop trying to “fix me”.
  • Although not necessarily  written about depression, but The Spoon Theory written by Christine Miserandino is often useful in describing how my capacity to face the world can really depend on so many factors differing from day to day.  (for those who like card games like MTG and Hearthstone, I also like to substitute spoons for mana)
  • There are many many others, in songs, literature, web comics that are so fantastic, some of which I will link below.

But I wanted to think about an analogy of depression that works in the recovery process.  Not in a “happily ever after” way, because whilst that can be inspiring when you’re in the right mood, often when you’re depressed, you’ll shun anything that seems too ambitious, and too much optimism can start to grate.

I wanted a method of explaining recovery to myself and others, a method that had parallels to the struggles of recovering from depression, that portrayed how difficult it could be, that it is hard work, but that it is possible. So I worked out this analogy for myself:

The pool analogy

Drowning as a crisis point in Depression

I am not the first to depict the feeling of being stuck in depression as the feeling of drowning, that you feel like you can’t breathe, that you simultaneously struggle to keep afloat, but also struggle to feel your feet on the ground.
You feel like the more you thrash around, frantically trying to save yourself, the more tired and worse it gets.
At some point if you feel no one noticing you, you might just give up, and let go.
You’ll cry for help, and thrash around, hoping someone will notice, that someone will help.
You’re in a pool, not an ocean.
 
I like to remind myself that, even though drowning in a pool feels just as threatening and terrible and like you’re going to drown as much as drowning in the middle of the ocean, there is help available. Even in the ocean, you can be rescued by coastguards, and rescue specialists, the passing fisherman, but in a pool you’re mostly likely to be rescued, so hang on.
Lifeguards, buoyancy aids
I nearly gave up trying to get help, and nearly let myself drown to death, more than once.  At the last moment, my doctor threw me a buoyancy aid, in the form of my medication.   I struggled for a while though, to put it on correctly, and felt like it was hindering me even more, and it felt like it was strangling me until I was used to it.  My medication turned up the volume on my suicidal inner voice, no more incessant, but definitely louder.
My eternally supportive boyfriend, Logan, acting as my hunky lifeguard jumped in to help, to swim along side me, and my therapist T coached me to the edge of the pool.
I’m now working to hoist myself out of the pool.  My buoyancy aid medications will make it harder for me to sink.
Therapy has helped me to the edge. Logan is giving me a hand and acting as cheerleader.
I’m no longer in immediate danger of drowning, but not quite completely out of the pool and warm and dry.
I have less physical energy and I’m weaker than I used to be before I fell into this pool of depression.  But I’m at the ledge, and I just have to hoist myself out.  I have to do it with my own energy.
When I do, when I finish therapy, if I ever wean off my medication, I know that being out of the pool can be cold and wet, and feeling the full force of gravity on hard ground will be difficult at first.
But, I’ll reach out for a towel, I know that one day I will be warm and dry.

As you can see, it’s still a work in process, but considering that the name of this blog is based on it, I wanted to blog about it as soon as possible.  

Further reading