“You have Aspergers?”

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 5 – Hitting the Wall

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

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

Aspergers and Familial Embarrassment

I’ve complained about feeling like a target of disdain from my family but the truth is, I’m not the only one.

I have this uncle on my father’s side who probably has Asperger syndrome but I don’t believe he has ever been officially diagnosed. He has trouble reading social cues and empathising with others so overall his capacity to function in mainstream society is very low. He lives with my grandma and has been unemployed for at least ten years, possibly longer.

And yes, he’s the one that my mother holds over me whenever we’re having conflict. You’re the one with the social dysfunction, and that’s obviously what any conflict we have is based on. You need to apologise and accept that you’re just a shitty person compared to the rest of us. If you don’t, you’ll end up living in the basement like him.

As far as I know, he’s not there because he refused to lie down to his mother’s emotional blackmail. He’s there because he’s tried to live independently in many different contexts – as a bachelor, married, as a Buddhist monk – and it’s all gone to shit because he can’t empathise with others and live under anyone’s rules but his own. Maybe he could have if he got the same kind of support when he was younger as I did.

Not that my grandparents didn’t care; it was a different time where there were no behavioural disorders, there were just bad kids who were socialised into a lifestyle of ostracisation that would be so hard to escape.

He presents as what you would call an oddball but he’s harmless unless you’re the type of person who is distressed by conversations dominated by talking about chewing tobacco and tarot cards. My mother would appear to be one of those people.

He embarrasses her. I came to understand that very early on in life, I didn’t fully understand why until my understanding of adult interaction developed later on. I knew there were tough times. He’d been married twice, to the same woman but both marriages were short lived. He’d attempted suicide a couple of times. His life seemed far removed from my own until I started struggling myself in my early twenties and the similarities became frighteningly clear. Looking at him can be like looking into a possible dismal future of wasted potential and suddenly my mother’s threats developed a powerful hold over me that still keeps me wake at night.

It makes me sad, thinking about how things could have been different but I don’t know if my mother feels that way. She never lets on if she does. She just gets embarrassed. Every time we have a family get together, she can be heard bemoaning his presence afterwards. He makes her uncomfortable, and dislikes the way he dominates conversations.

Last weekend we had a party for my grandma’s 80th at a nice restaurant. I brought my boyfriend with me, this being the first time he’d met my extended family. As soon as we walked in my uncle came up and thrust a packet of tobacco under my nose, joking that it would enhance my sports performance. I had to politely decline a couple of times before he got the message but by now I’m used to his manner; this interaction didn’t bother me at all.

Out of the corner of my eye I could see my mother looking alarmed as she does whenever he talks to one of us children but no drama ensued and we got on with the party. All was forgotten and my strongest memory of the day was the look of pure elation on my grandmother’s face when the waiter placed her birthday cake in front of her.

My mother however was still bothered by the interaction between my uncle and I today when I went to her house to do some work. She stood with me as I typed away and asked me fretfully,

“Did I imagine it or did he try to make *BF* take some chewing tobacco?”

I assured her that he was offering it to me and tried to laugh it off, but she wasn’t done.

She vented at me for a while about how embarrassed she was. She asked me if I could see that the chewing tobacco represented a destructive fixated interest. I shrugged.

I wish I could pinpoint why this makes me so uncomfortable.

Maybe it’s just as a fellow aspergian I feel uncomfortable hearing him described as an embarrassment. My view as an insider is going to be different and my mother has made her feeling over some of my less than genteel behaviours abundantly clear. She doesn’t like me ‘engaging’ him. I talk to him but I’ve become good at keeping our conversations being derailed by fixated interests. I don’t see why I should pretend he doesn’t exist but I feel like the rest of the family are on a different page. Mother got annoyed when she found out that I’d been interacting with him on facebook. By interact I mean that he comments on my status, I reply to him. That’s as far as it goes

Is it just my non-NT status that makes me sad, rather than embarrassed? I can see that his behaviour is often totally inappropriate. It’s not hard to see how his life ended up as it has and while I struggle to accommodate other people in my life, it’s something that I consciously work on because life is impossible without some form of coexistence.

It’s also interesting that he’s my dad’s brother, the closest one to him in age but I don’t recall him ever giving his take on the situation. I feel like I’m going to have to ask him about it at some point just to make sense of it all. Right now though the thought is too upsetting, I have the feeling that at least it would make him uncomfortable.

In the mean time I can’t stop wondering, how long until my family start pretending that I don’t exist?

Mac

Autisitic…or Person With Autism?

Who is insisting on that distinction and why?

PC terminology is a big deal these days.  Many terms can inadvertently cause offence it seems. It’s not necessarily a bad thing – people are finally starting to accept that using certain terms that have previously been acceptable jargon can be triggering to the minority group they are describing. Most people are decent enough to decide that they don’t want to causes unnecessary distress.

Certain people are becoming more insistent that people with a disability are addressed differently that what was previously accepted. For example, those of us on the spectrum are no longer autistic. We are people with autism.

When I say certain people, what I mean are parents of people with autism (yes, I’m prepared to play along.)  I have never head anyone on the spectrum describe themselves this way, and I know quite a few.

I have a lot of gripes with how parents talk about their children on the spectrum. For example, if I hear or read anyone describe aspergers as a “not a disability but a wonderful ability” ONE MORE TIME I’LL…probably write a whole blog post explaining why I find that distasteful.

Ahem.  Where was I?

Oh yeah, PC autism talk.

I won’t be too quick to dismiss this latest jargon trend emerging amongst the mummy bloggers, but I’m still wrestling with whether I’m prepared to hop on the band wagon.

I’m not easily outraged. Sure I don’t understand social cues on an interpersonal level, but I’ve spent a lot of time people watching to try understand them better. I like to think that as a result, I’ve developed a decent understanding of people’s motivations in a broader sense.

Intent is very important to me. I’m not easily outraged by sketchy terminology because that kind of reaction best reserved for those who are being intentionally dismissive or derogatory.  Being overly sensitive about terminology regardless of intention is really quite precious.

Do you really think that those describing people on the spectrum as autistic are intending to be derogatory? Really?

The reason why hate terms are being phased out is because they existed to isolate and discriminate the people they are used against.  The word autism simply doesn’t have those connotations for me.  It’s in a completely different category to other words that have been thrown around to describe the socially challenged.  These are words that have been rightfully stigmatised.

For example.  Do you think that calling someone autistic is on par with calling them a retard?

UGH!  What a horrible word that is.  That’s triggering. That’s a word that caused me serious distress, and causes me to cringe whenever I hear it. No-one who uses that word is interested in being understanding, insightful, tolerant. Thankfully, these days it’s largely recognised as a hate term, and using it is a grave social faux pas.

You might argue that as a person with aspergers as opposed to high functioning autism, I have no more right to assume the thoughts of people with autism on the matter than the family members observing from the outside, but with the elimination of aspergers from the DSM V we’ve all been lumped in together. Now, all of us on the spectrum are people with autism. I think of myself as a person with autism..

Am I offended by being described as autistic? No. I don’t appreciate anyone jumping down my throat for using the term though I am open to being educated. I get that insensitive terminology wouldn’t just be offensive to people with autism, it hurts everyone close to them

Describing someone as autistic can be seen as defining someone with their condition.  And some people on the spectrum are actually in favour of that.  If a person with cancer beats their cancer, or a person with epilepsy stops having seizures, they, they personality and thought processes which define that, are not changed.  Not so with the person with autism.  Remove the aspergers and I’d be looking at the world in an entirely different way.

I still don’t consider myself totally defined by aspergers, but when people find out that I have it, suddenly everything I do is an ‘aspergers thing.’ And it irks me beyond belief.  But I know that the problem is their ignorance, not me.

Maybe, just maybe, the reason that I feel apathy towards that term ‘people with autism’ is that I feel secure in my diversity as a person. I know I’m more than just a diagnosis.  Maybe the reason that others on the spectrum want to be referred to as autistic is because they’ve also come to terms with their autism as just one part, albeit a significant one, of a colourful personality

Maybe, just maybe, the reason that parents of people on the spectrum are bothered by the terminology masks a fear of a life defined by limits rather than potential.  That the diagnosis will end up defining a life time of social panic, struggles to stay in gainful employment and maintain relationships. At the more severe end of the spectrum it defines carers fatigue and an inability to live independently.

Austism parenting can be challenging and heartbreaking at its worst. I realise that word throws your child’s limitations in your face, and focussing on limitations isn’t helping anyone get the most out of life.

While you can refer to me as autistic all you want, I don’t want to be that person who throws your child’s limits in your face. That’s rather rude.

Prejudiced people regrettably tend to be more vocal but I’ve found that most people do want to be supportive and are happy to be educated. So If they accidently cause offense, be patient. Be kind. Chances are, that’s the courtesy they are more than willing to give you.

I’m still not a hard core advocate of the terminology but I don’t want to hurt anyone when they’re just trying to be as positive about life as possible.

I may be blunt, I may be critical, but I implore you all to consider my intent.

My intend is to be your ally. To be your friend.

After all, that’s what people advocating for a change in terminology are trying to be for me and others like me.

Peace, yo.