“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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I Can’t Do Funerals

I went to a funeral for an acquaintance from my sports club this week.  It was a brief, tasteful service followed by lunch at the local RSL.  All of us from the club came wearing our jerseys.  I think his family would say the day went well.

Except I was a mess throughout the whole thing.  There weren’t enough seats available so I stood up the back with Pea and spent the service trying not to break down, wiping tears away on my jersey.  At one point in the service everyone took turns to place a rose petal on his coffin.  When it was my turn I went up with my head down because I was embarrassed at being so upset.  Our friend had more to do with Pea than me and he wasn’t crying.

I’m like this at every funeral I go to.  It doesn’t matter who it’s for, how well I know them – not at all in some cases – funerals turn me into a mess.  I get upset then try to hide my being upset because I worry that people will think I’m being inappropriate crying over someone I didn’t know very well.  And if I do know them well I still question the appropriateness of my grief.

As a person on the spectrum no event makes me question my behaviour more than a funeral.  Am I grieving too much?  What do I wear?  Do I talk to the family or do they want to be left alone?  Should I even be at this funeral?  Did I have enough to do with him to earn a place here?

I’ve got to remember that death and everything around it is awkward for literally everyone.  When I went to this funeral no-one said I shouldn’t be there.  Several people in fact said they were happy to see me.  And as we had lunch at the RSL exchanging stories and memories a sad day turned into a good one.

After all, nothing brings people together like a funeral.

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

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.