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.

 

 

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Jessica Marais’ Bipolar Disorder is Not About You

I’ve always been interested in how the topic of mental health is handled by those in the public eye.  While celebrities might live lives far removed from our own, their take on complicated matters like a bipolar diagnosis tends to be both influential and reflective of the views of society as a whole.  Every now and then you see a story about a celebrity coming out of the ‘mental health closet, and I’m always all over those like a rash.

So when I saw the story about Jessica Marais’ interview with Woman’s Day appear on my news feed, I fell down the rabbit hole exploring every facet of it.

Here’s the news.com.au story, which summarises the Woman’s Day one:

Click here

And here’s one published on Mamamia, which goes a bit more in depth and takes opinions from other people living with bipolar disorder

Click here

If you can’t be bothered clicking, here’s the abridged version:

Jessica Marais, 29 year old mum of one, has struggled with bipolar episodes from age 12

She has a family history of the disease

She chooses not to be medicated and feels that her condition is controlled well

She has done cognitive behavioural therapy and says it was beneficial

she feels her toddler can “pull (her) out of” depression

The author of the Mamamia post reached out to the Black Dog institute for comment.  They supplied an overview of bipolar disorder but refused to comment on the specifics of Marais’ case.

There was an undercurrent of uncertainty in the Mamamia article because the author wasn’t sure how to feel about Marais’ revelation, because some of the things she said do seem to be controversial on the surface.  They ended the article with a selection of comments from bipolar suffering readers, which ranged from congratulating her on her bravery for coming forward to condemning her irresponsibility for (apparently) suggesting that all bipolar can be controlled without meds.

I don’t love the way this story has been approached.  Bipolar disorder is only discussed on an in dividual level, rather than acknowledging sufferers as the diverse population that we are.  All commenters used their own experiences as a measure of how well Marais was managing her condition, and were critical of her when they found that her experiences and management strategies were different to theirs.  Which is wrong.

Because guys?  Jessica Marais’ bipolar is not your bipolar.  It is not my bipolar.  We have a disease that presents on a spectrum that varied widely in presentation.

I suspect that the reason the folks at Black Dog didn’t want to comment on Marais case was because they didn’t want to present her as a single embodiment of all bipolar sufferers.  She isn’t, and I can’t find any point where she claimed to be.

I have bipolar disorder.  Like Marais, it appeared around age twelve and has been a major feature of my life ever since.  My experiences are widely different than what she represents hers as, but I don’t think that’s due to any lies or irresponsibility with management on her part.  Since I was properly diagnosed at age 20, I’ve read up extensively to educate myself on the disease as a whole, not just what it means for me.  So with that in mind, I’ll be offering my perspective on the story.

I find it interesting that she mentions her family history.  It’s been proven that there is a genetic link for the disease.  I know my family has enough problematic mental health genes to supply material for a whole psychiatric conference, but the only person apart from me who has been diagnosed with bipolar is my paternal grandmother.  I remember my dad talking at length with my doctor when she broke the news about my diagnosis to him at my request.  After he was done, he put down the phone, turned to me and said sadly “I supposed I should have expected it in one of you”  I think anyone who has been recently diagnosed should do a little digging in the family closet.

The major issue people have with her interview was where she claimed that she doesn’t need meds because she’s done CBT.  I have to admit, when I first read that I groaned out loud.  I know when I skip meds even for a few days it’s a pretty rapid descent into cray-cray town.  I can understand why it garnered such a negative reaction from the public because remember the last Australian public figure with bipolar who claimed he could handle himself off his meds?

Because I do:

465883-matthew-newton

via http://www.news.com.au

…yeah.  Sure hope he’s changed his mind.

But in the midst of my not-another-Matthew-Newton despair, my wise mind kicked in and I remembered what I’ve learnt about bipolar as a spectrum.  Her bipolar could well be more manageable than mine, I just don’t know.  A lot of bipolar people I was in hospital with were involved in group therapy for CBT, DBT and interpersonal therapy and responded well to it.  Jessica would have learnt about distress tolerance, self talk, diversion tactics amongst other things which once she’d practiced enough to make it second nature, could help take the edge off when she’s having an episode.

She also talks about self awareness which makes me think that she is actually controlling it without meds, or is well on the way to at least.  If you’re experiencing mania or depression, recognising those episodes for what they are will help you be more proactive in overcoming them.

There are bipolar people like me who will likely rely on meds for the rest of their lives but many people with a mental illness diagnosis won’t.  They may need them to be on and off to overcome rough patches but with the right kind of support and therapy they may cope just fine off them.  Once again – bipolar disorder is a spectrum.  For some it’s heavily debilitating, others are towards the lighter end of the scale.  Marais is likely one of those people.

She doesn’t say that meds are unnecessary for all bipolar patients, she was simply stating what works for her.  And quite frankly, there just isn’t enough talk about what a huge fucking difference behavioural therapies can do for people with mood and personality disorders.  Many people who need it don’t get it because they’re suspicious of and there needs to be more people who’ve done it publically talking about how it helped them.  So for singing the much deserved praises of behavioural therapies Jessica, THANK YOU.

The last point which I found interesting was where she says that her kid has been beneficial for her depression.  Now I don’t think she’s saying that to cure depression you should up and start reproducing, but it was a surprise to me because I’d assume that someone with a bipolar diagnosis would be a heavy risk for PND.  Then again, I’ve had more than a few friends who’d struggled with depression tell me that they actually saw improvement when they started a family.

Why is that, I wonder?  If I were to guess, I’d say a kid is a sure fire way to keep you busy.  My hospital psychologist was fond of saying that the best cure for depression was to do the opposite of what you feel – lying in bed doing nothing, not stimulating your brain is perpetuating the imbalance in your brain.  I’d imagine that finding motivation to get out of bed and face life is much easier when you have a little human screaming at you to do so.

If you could take anything away from this article, it’s that I ‘d rather you not look at a mental illness diagnosis as a one size fits all profile.  No treatment plan is going to be perfect for everyone and if someone is happy and healthy we should trust their ability to do right by themselves, even if we don’t agree with their methods.  This is why I love celebrity mental health stories – the more different experiences that we see, the more we will come to understand that the mentally ill community is one of diversity, and different experiences should accepted, not condemned.

Rock on, Jessica Marais.  You’re not obliged to share your personal life, but I’m glad you did.