asperger syndrome australia

“You have Aspergers?”

Mac the Disordered Asperger Syndrome ,

If you follow me on Instagram you know that I’ve taken up roller derby recently.  I’ve really thrown myself into the community, helping with the club’s events as they come up.

It just so happened that we had our first home bout of the season last weekend so there was a lot to do, and I ended up spending a lot of time with my new team mates.  And I found myself having two conversations about autism with two different people.

The first one was with one of my teammates who asked me if I had Aspergers as we were hanging up decorations.  I said I did, and she said she recognised the signs because her ex husband had it.  She went on to describe how controlling he was which made me really uncomfortable.

It often happens that if someone asks me if I’m autistic, or if I tell them, they go on to tell me about this person close to them who is on the spectrum who they don’t like for whatever reason.  What’s the point of that?  Are they implying that it’s up to me to reassure them that autistic people aren’t all bad?  Because I don’t feel like I should have that responsibility.  I’m not saying that this woman doesn’t like her ex husband as a person she just couldn’t tolerate his behaviour, but still.

The second person to ask me about Aspergers was my coach.  I had been running back and forth all day between jobs asking her what needs to be done next and I was sure she was sick of my questions but she never let on.  Still she waited until we were at the pub for the after party to ask me.

I had just been to the bar and took my drink to a table where she and several others were sitting.  I happened to sit next to her and when I did she withdrew herself from the conversation at the table and turned to face me.

“are you having a good night?” she asked with what I thought was an unnecessary level of trepidation.

“Oh yes”

“Now look” She said, looking very concerned “I want to ask you something, I’m a bit drunk so I’m just going to lay it all out there.  You have Aspergers?”

“Um…yeah”

“Ok…I just want to know as your coach that we’re not doing anything that will offend you.  Do you mind us giving you advice at training?”

“I like it when you give me feedback, it helps me pick things up quicker.”

She then touched me on the shoulder and apologised.  I assured her that I don’t mind being touched.  Except inappropriately of course.  She asked me what social aspects I find difficult, I explained the problems I have with eye contact and keeping up with conversations.  She then said they were very glad to have me, and that she thought I would be an asset to the team.

I always feel uncomfortable after these conversations, even when they say nice things about me like my coach did because I like to think I pass as neurotypical but clearly I don’t.  I guess it doesn’t matter in the scheme of things, I can still do everything a neurotypical person does but I still never feel quite prepared for these conversations.

Mac

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The Rehab Diaries Week 6 – Get Me Outta Here!

Mac the Disordered Uncategorized , , , , , , ,

I’d started getting restless.  It was obvious that I was getting overcooked.

I’ve heard staff and patients carry on about the evils of becoming institutionalised.  Getting used to being taken care of.  I don’t know that I’ve ever experienced that but I do know that after a certain amount of time in hospital I start feeling very anti-institution.

It’s not that it doesn’t happen – for the long term unemployed chronically unwell, particularly the youngsters, hospital seems be their primary social outlet.  I’m sure I don’t have to explain why that’s problematic.  But me, I’m independent by nature.  Even six weeks in I’m struggling to take set meal times in good humour.  Breakfast at 7.30-8.30.  If you sleep in like a normal person who hasn’t got anywhere to go, bad luck it gets cleared away and you miss out.  Lunch at midday.  Dinner at 5.

I miss being able to go for a walk without signing out and specifying a return time.  I miss driving.  I miss having the freedom to choose what I eat.  I miss baths.  I miss shaving.  I miss being able to watch more than an hour of youtube videos before I’ve used up my downloads for the day.

I’d established on fluoxetine and had seen definite improvements.  My irritation had toned down a lot and I was feeling general good will to those around me.  Even hearing guitar boy mindfully strumming away down the corridor didn’t make me uneasy at all.  I know my irritation towards him has been unfair; he keeps to himself and refuses to participate in the drama and politics of the other youngsters on the ward.  I can respect that.

To test my anxieties I went on leave one night with BF for a dinner and movie date.  A few weeks ago that would have been impossible but with the improvements I’d been seeing I was keen to try some regular world stuff again.

It went well.  I sat through it, even though it was a long movie and the cinema was very crowded.  I’m still hyperaware of the movements of all people around me so when there’s a lot of people in one space I get overwhelmed.  There were no meltdowns in the cinema that night however.

After last week I finally felt that I’d had some quality time with my therapist.  I was talking with her on the Tuesday of that week, saying that I was doing so much better in just one week and that I’m totally ready to go home.  I was prepared in my doctor’s appointment that week to ask for a discharge appointment on Friday.  She reminded me that, being a voluntary private clinic, I can actually leave whenever I damn well want.

Generally when a patient has reached the end of their treatment plan discharge planning begins a week or two in advance.  We talk about the support systems that we have in place, which outpatient therapists we’re going to see, whether or not a referral to day programs is appropriate.  The doctor has to record a final diagnosis (which in my case is practically a paragraph) and fax a bunch of discharge summaries to our various community care providers.  The number of appointments is usually planned around the patient being discharged on the day of the last appointment.  As we know however, patients can abruptly decide to check out without discharge planning.

I hadn’t had those conversations with my doctor yet.  I like to think that discharge planning for me isn’t hugely complicated; my care team is well known to my doctor and hasn’t changed much in the last few years.  I believe she was waiting to see how I established on fluoxetine before she started talking about it but in our appointment she accepted that I was doing better.  I told her I wanted to leave tomorrow.  I expected her to be taken aback but she said she was willing to support that, and set about writing discharge summaries.

Given that I’ve mentioned patients checking out without discharge appointments several times now, you’re probably wondering…how does this happen?  Well, all it takes is to inform the nursing staff and they’ll bring you the discharge papers.  My doctor ordered them and that evening a nurse sat with me and asked me a bunch of questions from a sheet of paper like, did I have accommodation? (yes.)  Who would be picking me up? (BF would.) What is your plan for the next few weeks? (moving house.)

I signed off on my details again, and when they provided me a feedback form, I wrote about the Christmas fiasco, saying I think everyone would have coped better with some more staff on.  That was that, and she left me to pack my things.

The morning of my victorious exodus discharge I was really only waiting for one thing before I could leave – scripts.  And the CMO took his sweet time with those.  BF arrived at 9.30, we got kicked out of my room at 10 so they could clean it for the next patient.  We finally got hold of him at 10.45

And by then I’d started feeling unusually drowsy.  While we were waiting for the scripts the nurse unit manager burst in and asked me if I noticed anything different about my medication that morning.

As soon as she asked I realised what must have happened.  I take 80mg of zeldox a day.  60 at night, 20 in the morning.  This morning I’d taken the 60.

My nurse came in at 8 as I was preoccupied with trying to force my running shoes into my carry bag (how do I end up leaving with double the clothes I came in with?)  This particular nurse hadn’t dealt with me and my meds before.  I took the cup, swallowed it without looking and got back to work.

I couldn’t remember if there were extra pills in the cup, but I did think it went down harder than it usually does in the morning.

The nurse was trying to say that my meds couldn’t have been wrong because I would normally question them if I saw something odd.  And it’s true, after the contraceptive pill debacle I always looked over my meds before taking them.  This mornings, of all mornings, I decided to make an exception.  ARGH.

So my return home wasn’t the joyous occasion it should have been because I rolled straight into bed and crashed, leaving my poor BF to work on his laptop instead of celebrate.  Then I couldn’t sleep that night because I could only take a 20mg tablet to balance the overdose out.  Nurses, take note.  Double check what you’re giving out, just because it’s not life threatening, doesn’t mean this shit doesn’t matter!

So that’s it.  My rehab journey this time around.  I may do a post talking about what I’ve been up to since I’ve been out –  I haven’t been overly interesting but there has been some changes.

Mac

The Rehab Diaries Week 5 – Hitting the Wall

Mac the Disordered anxiety, bipolar disorder, depression, rehab diaries , , , , , , , , , , , , , , ,

I’ve hit the wall, and hit it hard.  To think it only took me four weeks.

My anxiety is spotty.  It’s kind of on and off but when it’s on it’s intense.  I’ve had days where I spent hours just pacing and ruminating.  Leaving the hospital is still making me feel sick.  Le boyf is making me go out, and is getting concerned over how I’m somehow not getting less shaky every time we do go out.

It seems to be spiking at night.  At night, anxiety is just on.  I guess it’s because it’s the time of day when the zeldox levels in my system are at a low but I just run in circles around my room, so dizzy and shaky, trying to wear myself out.

I have an agitating factor at night time; there’s a very real issue that can prevent me from sleeping.  My neighbour’s.  Fucking.  Snoring.  It has to be heard to be believed.  And it can be heard through the wall with the door shut.  They gave me ear plugs which do work, but they’re uncomfortable and I don’t like wearing them.

The rational part of my brain tells me that I shouldn’t be expecting to not be a competent, non agoraphobe in just a few short weeks.  The depressed all of my brain asks when I will ever not be an incompetent agoraphobe.  Suicidal ideation is back.  I just can’t do this for another fifty-odd years.

I had to make the decision of whether to return to my regular inpatient psychiatrist who was returning to work this week.  This was more complicated than it sounds.  On one hand, I’ve seen the regular doctor for five years, we work well together and it’s important to keep her in the loop.  On the other hand, I’ve come to realise that these two have very different philosophies.  While I was frustrated at my current doctor to begin with, I came to realise that his comparatively conservative approach isn’t always a bad thing – bringing up my drugs slowly allowed me to tolerate them much better, and adding them to my chart as PRN rather than standard gave me greater control over when I increased the dose.

The deciding factor was whether I would have to change therapists.  Each doctor has a different psychologist working under them, and I was concerned that if I went back to my old doctor I’d have to change my therapist as well.  I just wasn’t prepared to change both at this late stage.  When I asked him though he promised that he’d fix it so I could see my regular doctor and his therapist.  So it was settled.  I’d leave his care and move to hers.

I was worried about this appointment, not because I’m scared of her – as the staff kept teasing me – but having explain my entire case summary to a new person is exhausting.  Plus with her less conservative approach to medication I was afraid that she’d effectively blow up this current regime and put me straight on a different cocktail which would make me violently ill, and keep me in hospital for several more weeks.

Despite my fears she did no such thing, but explained to me that she would normally be treating anxiety with a certain type of anti depressant.  Which as we know, for bipolar patients, is problematic.

She contemplated prescribing lovan, which is apparently a safer class of the drug but I know I’ve been on that before, I just can’t remember when or for how long.  If it was for a long time, that would indicate it was working.  She promised to dig through my files to see if it was in the last five years, I promised to check with my parents because I suspect it was long before that.

She also made the morning zeldox a permanent addition to my medication chart, so I don’t have to explain to the nurses every single morning why I need PRN just after I’ve woken up.  Taking it in the morning is definitely getting easier but I’m still struggling some days where I end up doing sweet FA all day really.  I have what my dad would call ‘bed days’ when he talks about his nursing home patients, where I just lie around and watch tv.   Of course dad would say that bed days are reasonable in elderly folk on their last legs who have slowed right down, not a young person like me.

Another addition to my anxiety is the demographic shift in the hospital’s residents that has happened suddenly this week.  I’ve noticed over my admissions that the hospital does go through stages of being either mostly young or mostly older folks over periods of several weeks. And there never seems to be a whole lot of inbetweeners like myself.  Maybe because they tend to assign themselves to one of the groups and manage to blend in but I’m not interested in either.  Although there are a few who, like me, do keep to themselves.

Anyway up until now, including over the holiday lockdown period, it’s been a decidedly old timers scene.  But this week has seen an influx of youngsters and whenever this happens the hospital turns into a giant sleepover party.  Shrill laughing, gossip, cliques, running in and out of each other’s rooms.

That last part I find particularly anxirty inducing.  I know that seems irrational but truth be told I would never go into another patient’s space.  And I would not tolerate them coming into mine.  In fact it’s against the rules to have another patient in your room.  Even if it wasn’t I would be enforcing that as a personal boundary.

The nurses don’t appear all that concerned; certain rules aren’t strongly enforced when nothing is being hurt except maybe the sensibility of personal boundaries.  One good thing about the youngsters is that they all want to hang out the smokers area so at certain times of the day the hospital completely clears out when they want their nicotine fix.  I do appreciate the quiet.

Something that has made a huge impression on me in my personal therapy journey is the importance of appropriate personal boundaries.  Generally – there are some exceptions of course – the older crew are totally on board with this idea, as many have been in therapy for years but watching the current lot is good for meditating on that concept.

I’m not saying that all young people suck at boundaries but, as I said seeing certain ones running into wach others rooms and jumping on their beds makes me wonder.  I could do I could do a whole other blog post on the topic but the gyst of it is, we are told that while socialising in here is fine, we are discouraged from maintaining friendships once we get discharged.  And after being admitted with certain people a number of times you often come to understand that despite presenting well freinship with them can be exhausting.  I include myself in that description, I suck at maintaining friendships.

Some food for thought might not be a bad thing, hey?  Anything to distract me from the anxiety.

Mac

Link Between ASD and Substance Abuse

Mac the Disordered Asperger Syndrome , , , , , , , ,

An interesting article from Psychology Today appeared on my Facebook wall today:

Autistic Symptoms Make Higher Risk For Substance Abuse

Which apparently doesn’t mean people with an autism diagnosis:

‘As you would expect, previous research shows that people with autism tend to have low rates of substance abuse – the preference for low risk and avoidance of social situations means less drinking or drug use. But new research from the Washington University School of Medicine found the opposite: in their study of 3,080 Australian twins, people with symptoms of autism were more likely than people without symptoms to abuse alcohol and marijuana.’

So I think this article is saying that people toward the lighter end of the spectrum, as opposed to those with HFA, are at a higher risk of substance abuse issues.  It’s been observed that Asperger syndrome has a higher risk percentage of mood disorders than the neurotypical population.  One in three people with an Aspergers diagnosis will experience depression in their lifetime, as opposed to the one in five in the general population.

People with mental illness do tend to self-medicate.  A mental illness diagnosis reduces your life expectancy by up to twenty years and no, it’s not because of suicide.  The biggest killer of the mentally ill population are diseases acquired through smoking.  Also significant causes of death are cardiovascular diseases and diabetes.  Diseases acquired through various forms of self-medication.

Me, I have an addictive personality.  At any given time I indulge in a number of obsessive behaviours but as we know I am a hotbed of assorted psychological malfunction.  To blame my behaviours solely on any one of the conditions would be disingenuous.  Labels are useful tools for getting help but not always for treatment – rather than worrying about what was causing my obsessive behaviours the most helpful approach has been to address the psychology behind the behaviour (hello DBT.)  That way we can break the cycle and form some new ones.

So what does this mean for people on the spectrum?  It’s important to remember that association is not the same as determinism.  If you have a higher risk for substance abuse, that does not mean that you will be a substance abuser.

Like how I have bipolar disorder which means I have a life expectancy of 60.  That does not mean I’m going to drop dead on my 60th birthday, it means I have to take care of myself.  I don’t smoke.  I need to eat better and exercise more.  But also accept that there are no guarantees in life – I could walk out my door and get hit by a car tomorrow.

Be mindful of your own behaviour.  Acknowledge when your lifestyle changes and be honest with yourself as to why.  So you don’t socialise as much as you used to.  Why is that?  Maybe you’re under a lot of pressure at work right now and having to stay back long hours for a while?  Fine.  Or has your confidence slipped?  Do you not feel as close to your friends as you once did?  And do you find yourself reaching for the bottle more and more now that you’ve got more time sitting on your own in front of the tv?

Changes in weight, sleep, lifestyle should always be examined.  It’s not always going to be a cause for alarm, life is about change after all but change is not always positive and not always necessary.

Take care of yourselves

Mac

VENT INCOMING

Mac the Disordered anxiety, bipolar disorder, depression, mania, rehab problems , , , , , , ,

I just really hate everything and everyone right now.  Suddenly I understand why people choose retreat to a life of solitude in mountain caves.

I spent my first week in hospital being depressed.  I spent the second week being manic.  I will have the rehab diaries detailing both up soon, I promise.  But now things have come full circle and I seem to be the way I was when I came in.  Really.  Fucking.  Shitty.

I just hate humans.  Can’t stand them.  Don’t want to be around them.  Don’t want to see them.  Don’t want to hear or talk to or see any evidence of us sharing oxygen.

Oh I’m sorry, does that sound unreasonable?  Well I regret to inform you that this is a vent and if you have a problem with me sharing my pent up emotions on the internet I can’t help but wonder what the fuck you think people do on the internet between porn vids?

I have no tolerance.  None.  Can’t seem to open my mouth without effs and cees pouring out.  (Or type apparently…) The ward is closed over Christmas, they haven’t been admitting any new patients so you would think an easily socially exhausted person like me would be loving it.  A maximum 65 patient facility only housing 19 patients.  Actually I’m the only one on this side of the ward.  But am I grateful?

Ha.  Ha.  Is Pepsi a superior form of cola?

I’m hiding in my room all day because every time I see or hear people I get so annoyed I have an anxiety attack.

Think very, very hard about the implications of what I just said.

Not because I’m scared of them.  Because I’m scared of myself.  They annoy me SO.  FUCKING.  MUCH.  I just want to scream at them detailing all the ways they’ve failed at life that I’ve inferred from overheard conversations and them sharing at group therapy  (which I stopped going to because every time I try sharing these fuckers talk over me) and why it is totally their fault so stop blaming everyone else.  I’d do it too.   I’m smart, educated and much better at using these privileges for evil rather than good.

And yes, I do get the odd violent intrusive thought that I’m not detailing here just because my therapist may or may not be stalking this blog.

(If you are reading this, no I’m not going to act on them.  I am perfectly clear on what happens if I do.  But I am getting the thoughts.)

People with personality disorders are intrusive.  They have no boundaries.  They think they can just come up to their next victim you and start telling you about their lives.  I also have a personality disorder, plus I am on the spectrum which means that I have ALL THE BOUNDARIES.  I don’t give a flying fuck about your life and prefer to do as much interaction on the internet as possible, thankyouverymuch.

But apparently my Resting Bitch Face, which I got so much grief from the staff about on previous admissions has resolved itself and something about me says “I am a pleasant, non judgemental human being!  Please tell me all about your problems and why it’s everyone else’s fault but yours!”

THE FUCK??

I can’t deal, ok?  I can’t pretend to be annoyed because it’s nine and the nurses usually give you your meds at eight and don’t they know you’ve got places to be.  Well you’re still in your fucking nightie so those places can clearly wait.  My meds are late too, but I’m trying busy myself until they arrive by showing some compassion to the understaffed nurses who are fighting an uphill battle to satisfy both management and 19 dickhead patients who all think their needs are above the other 18.

I can’t pretend to appreciate being looked to as the diagnostic authority on autistic spectrum disorders, which as an adult with Aspergers comes up way more often than you’d think it does.  Even when you haven’t told anyone that you have it, apparently them opening that conversation is still ok Oh you think your four year old has Aspersgers, why is that…?  Because he’s, like, super into aliens.

…WUT.  That it?  Really?  He’s making friends at preschool ok?  His co-ordination and eye contact is good?  It’s just the alien thing?  Yes I suppose if all the other mums at play group are being asked for Ben 10 action figures for Christmas and you’re being asked for alien crystals that is embarrassing but hardly grounds for a behavioural diagnosis.

I can’t take any more stupid right now

No I don’t want to hear you bitch about your dopey husband, who is the saddest looking person I’ve ever seen by the way.  The whole hospital has had to listen to you bitch about your husband this morning, every morning actually.  Every part of every day you’re shouting, sorry talking about something because that’s just the way you talk.

Yeah, the way you talk?  Is shouting.  And jarring.  And the reason you clear the room faster than a fart in a crowded elevator.

The latter delightful human singled me out as her prey buddy this morning when I decided that I wanted to do a puzzle but was told I had to do it in the dining hall because SOCIAL INTERRACTION.  It didn’t matter that I was clearly absorbed in this task, that I had headphones in, unfortunately I was sitting on my own when she decided to come in and shout about her life for the next hour.

She does this every day at precisely 10.30 am until lunch time, shouting into the air, looking for someone to hook into and talk directly to while everyone pointedly avoids her eye line.  I pointedly ignored her when she sat at my table and let the shouting commence, answered her phone, shouted into it then shouted about the call afterwards.

After about ten minutes of this I could take no more and left my puzzle, asking a nearby nurse if it was time for my blood pressure to be taken.  Luckily she was so on the same page and whisked me away to safety.  My puzzle lies abandoned on the table hours later because I am not putting myself in that position again.

Now, more on noise.  I don’t know what it is with people in private clinics finding so fucking difficult to use headphones but it needs to change or some people are getting smothered in their sleep (Dear therapist, I’m exaggerating, obvi!) Currently I find myself exerting some serious self-control about some selfish fucking bitch who thinks it’s acceptable to wander the halls playing her terrible Jessie J music on her phone full blast and sing full blast, off key of course.  At first I thought she was having an episode but it’s become clear that she just doesn’t give a fuck.

Fuck her.  I intend to keep putting in noise complaints until that stops

I wanted out of the circus to clear my head, before I did or said something regrettable – like, say, any of the above – and so I went on leave for a bit.  My parents came to pick me up and on the ride home the conversation turned to my recovery over the last few years.  Well, at least I think that’s how my mother would remember it.

What I remember is being blithely reminded how the whole family’s lives sucked five years ago and it was 100% all my fault.  When I tried to point out that yes, while behavioural therapy has done a lot for me, the family has also made headway in being understanding of me and my boundaries, I was told NUP.  Definitely you.  All you.  You were the problem, you’ve been mostly fixed.  As usual, my dad was notably silent.

These talks happen regularly and I do believe she thinks she is doing me a favour.  She keeps asking “remember when you used to tell me there’s something wrong with me?” one day I’m going to snap and go “well there is, it’s called a victim complex.  YOU NEED THERAPY”

But there’s no fucking point.  I’m the one with the personality disorder, I’m the one that likes to blame everyone else for my problems.  I don’t deny that I was a miserable piece of shit as a young adult but them admitting that there was at least a 95/5 percent contribution ratio to household drama between me and the rest of the family would be supremely validating.

Oh who am I kidding, I’m still a miserable piece of shit.

Are the drugs not working?  Do I need more therapy?  Is this just my personality?  My current tactic is still avoid, avoid, avoid.  I’m wearing noise control headphones to shut everyone out.  I stopped wearing bright colours because people were using my clothes as an excuse to talk to me.

I can just avoid people forever right?

RIGHT???
Are those crickets?  Am I hearing crickets?

Damn, that’s what I thought.

 

Mac