My Aspergers Journey

I’m at a sort of turning point in my life for the time being; where I finally really take ownership of asperger’s syndrome*. Like say “I have Asperger’s Syndrome” to my family, for example (so far the only example).

It may be a surprise that it is even a turning point. It is several years ago since I discovered aspergers syndrome and I have spent probably thousands of hours researching, watching videos and interacting online in relation to aspects of it, immersed in a sense-making process akin to what Cynthia outlines in her series “I Think I Might Be Autistic“*:

 

THE SENSEMAKING PROCESS

  1. Shift in identity – identification as aspie/autistic
  2. Retrospection – looking back at key life events in the context of this new identity
  3. Building narrative accounts – retelling the story of your life in light of AS/autism
  4. Sharing your narratives – strengthening and preserving your stories by sharing them with others
  5. Reflecting – the ongoing process of receiving feedback on your stories and reshaping them as your understanding of your narrative changes

From Developing a Sensemaking Narrative by Musings of an Aspie AKA Cynthia.

 
Cynthia’s list resonates well with me, but not in that order. In my case, step 1 is the last and hardest step. That is because “identification as aspie/autistic” is not just about what I am, it also represents a collective identity. The disadvantage of my extensive research of first hand accounts like blogs and forums is that I’m acutely aware that a lot of different people already own Aspergers/autism… define it and represent it. Continue reading

To Pass or Not to Pass…

This post is inspired by The Myth of Passing by Cynthia Kim, and The Lie of Social Skills Training by Jodie Van.

Because passing is a myth. So often what we’re doing when we’re passing is simply keeping a lid on our natural tendencies. And sometimes we’re not even doing it very well.

The Myth of Passing by Cynthia Kim of Musings of an Aspie

 

tightrope_walk_by_orfearus-d5bujc8

Image: “Tightrope Walk” by Orfearus

 
What does it mean to pass?

“Passing for normal” if you have a disability, means to mask your disability enough so that so called normal people don’t notice it. For example, if you are deaf but so skilled at lip-reading + hard working at getting by that people forget or don’t realise you are deaf, you’re passing.

They may instead think you are weird though, if they presume that you can hear what they can hear, and think you “ignore” information selectively or even worse, that you are playing social games with them.

Worst of all, if you tried to compete on equal terms in a hearing world as deaf you’d work hundred times harder than everyone else and still not or barely do as well as them on their terms. You’d be in a constant battle to try to piece together information from disorganised bits and hang on to the shared hearing-reality with your fingernails while your errors accumulated. And if you were to work that hard everyday to just try to meet basic expectations, you’d probably soon burn out.

With deafness, the problem is obvious and no one really expects a deaf person to compete with the hearing in a hearing world. No one expects a blind person to pretend to be able to see either.

With Aspergers/high functioning autism which is what Cynthia wrote about, the situation is complex, because many autistic adults are capable of appearing normal and social – to “pass as normal”, at least some of the time and in certain situations.

Jodie has in The Lie of Social Skills Trainin listed some of some key factors that make it difficult for aspies/autistics to socialise on normal terms:

  • sensory processing lag meaning you can’t process the conversation fast enough to keep up
  • trouble turning visual or abstract thoughts into words
  • literal-mindedness leading to misunderstandings
  • lack of executive function for keeping track of social engagements and who’s who
  • reduced amount of energy available for socialising, because so much is drained processing sensory input
  • not necessarily having the same pop-culture grounding as others, thanks to our often eccentric skills and areas of interest

Any one of those things could get in the way of socialising effectively, even for the most socially adept person. Most people on the spectrum have several of those things going on, and some of us have all of them.

The Lie of Social Skills Training by Jodie Van of Letters from Aspergia

  Continue reading

The bushfire situation is under control…

The NSW bushfire crisis has eased off with a change to cooler and calmer weather, and our neighbourhood has been smoke-free for several days. The big fires in Blue Mountains are of course still going but are mostly contained, and overall the situation is pretty safe. It is a nice sunny day under a clear blue sky, and the view of the horizon has never looked so good!

We were nervous but never directly affected, except for the smoke and scary news updates, of course! The edge of the Southern Highland fire (also called the Hall Road, Balmoral fire) expanded to 25 km south of us. I couldn’t figure out if we should personally worry about it so I did that, just in case, and spent my time on the roof clearing the roof and gutters, trimming down all bushes near the house (“it looks like a desert!” said my husband when he saw the result), raking branches and leaves off the lawn, hosing down vegetation, compost, roof and pavement, and learning about bushfire online.

The Southern Highland fire is now under control and downgraded to “Advice”, which means that it is no immediate threat to anyone at the moment, not even inside the fire zone.

I am struggling to stretch my mind around the magnitude of the land areas that have burned since last Thursday. The Southern Highland fire alone has burned over 15,600 hectares of land. The State Mine Fire has burned over 50,000 hectares, and I believe the total area of burned or burning land is about 118,000 hectares. When battling the State Mine Fire, the firies where working to contain a line of fire that stretched over 1,500 kms!

But that’s just the numbers. To get a visual sensation of the scale of the bushfires, try playing with the NSW Rural Fire Service’s Current Fires and Incidents map. Focus on a suburb not too far from the edge of a major fire zone, e.g. Appin north of the Southern Highland fire, and magnify until you can see all the streets and street names to get a sense of the size of the suburb. Then scroll down the map until you reach the edge of the fire zone. Keep scrolling. All the dark grey area on the map is burned or burning land. And this is the reality behind the map:

 

800226-09a644c6-39ea-11e3-9bcd-10262b6f8853

  Continue reading

Scary clouds on the horizon… about Sydney’s current bushfire emergency

Australia is, as everybody knows, highly flammable, and there is currently a large number of severe bushfires going on around Sydney; unusual for this time of year. A state of emergency has been declared across the state, and although the bushfires are of course spread across a vast area, the smoke is quite visible where we live. Well, in most of Sydney I think.

I have spent all afternoon today on the roof sweeping off branches and leaves from the roof and from the veranda roof as far as I could reach out (the veranda roof is not strong enough to carry me), and on a ladder clearing leaves and whatever else out of the gutters.

Then I swept the pavement and ripped up anything that looked dry and long haired and grew near the house. I was wearing my ear plugs all that time, because it is cicada season and the noise outside is deafening, probably somewhere between 120 and 150 DB, because these things really want to make themselves heard in their 6 weeks of adulthood (and then they die).

I haven’t been too specific about my location so far, but we live about an hours drive west of Sydney in New South Wales, Australia. I am not Aussie and don’t know much about bushfires except for what I have read in the news and on the NSW Rural Fire Service’s website and in the Bushfire Survival Plan. That’s why we cleared the gutters… the plan tells us to.

We are not done with everything the plan says yet, far from it. I don’t think we are in danger of being reached by any major bushfire front in the suburb where we live, but according to the plan, embers can travel many kms/hours ahead a front and start spotfires, and we do live just a few streets from bushland, which accordingly to the plan means our house should be prepared even if we don’t think it is in danger.

We are about 50 kms from the nearest major bushfire front that is currently burning. That fire alone has at this stage burnt well over 12,000 ha land (and counting). It was downgraded from “Emergency” to “Watch & Act” level after Thursday (the worst day so far), but the weather conditions are forecast to worsen again from tomorrow with high temperatures and gusty winds predicted.

Thursday I was in Sydney city. It was supposed to be a warm and sunny day, but instead a sickly grey haze covered the sky and made the sun look small, red and faint. It was surreal. Sydney is a big city far from the fire fronts, but the fires out there are so massive that it can darken the sky in Sydney when the wind comes from a “helpful” direction.

 

NSW BUSHFIRES
17 October 2013 – Photo from The Conversation

 
When I drove home westward on the highway that day, the huge dark smoke clouds were looming ahead in the distance all the time. The mobile traffic signs informed that the highway was closed further west due to the bushfires.

When I drove off towards my suburb, the traffic information sign there rolled 3 messages over and over on the screen: “Total Fire Ban”, “Report Suspicious Activity”, and “Activate Your Bushfire Plan”. Activate Your Bushfire Plan? Like, what now? There wasn’t any emergency warning on for our suburb, so that was confusing. Our bushfireplan is to drive to the city, but that seemed like a bit of an overkill since there was (and is) no acute threat to our area.
Continue reading

Kea’s Flight: a Book Review

keasflightcover

Kea’s Flight by Erika Hammerschmidt and John C. Ricker

Kea’s Flight is a strange hybrid of science fiction, political dystopia, disability rights advocacy and coming-of-age story. It takes place in the future, on a board a spaceship which moves with near-light-speed from Earth to an unknown planet, which the population on board is meant to colonise after the 21 years it takes to get there. The entire story takes place during the space journey spanning almost 21 years.

 
The Background Story

The purpose of the mission (along with others like it) is to solve a domestic political dilemma faced by Earth’s government. Earth’s ideology and population at the time of departure can best be described as the American Bible Belt gone global.

The dilemma is that the need to prevent overpopulation on Earth and the availability of advanced prenatal screening technology that detects potential disabilities and other genetic problems in embryos and gives the future-parents the choice to bail out of the pregnancy – collides with the popular opinion that abortion is murder.

Therefore, “removal technology” replaces abortion to end unwanted pregnancies, and the removed embryos are cryogenically frozen and stored; their numbers accumulating. Eventually, a series of space colonisation missions are designed as a political solution and PR project to get rid of the frozen embryos in an ethically acceptable way.

However, all that takes place long before the story starts. Time tensions is one of the interesting aspects of the story.

 
On the Spaceship: The Plot

The spaceship the story takes place on, is one of those “garbage ships” with unwanted potential people, sent off from Earth to colonise a supposedly habitable distant planet.

The ship consists of two sections connected by a tube. One section is for its staff (“the BGs”) and the other for its people load (“the Rems”). The Rems are all mentally disabled kids – many thousands of them, greatly outnumbering their guards – with embryo-stage diagnoses like autism, Tourettes and dyslexia. They are all of the same age, since they were all gestated and raised on the spaceship under its strict, robot-enforced big-brother like regime controlled by the BGs. They have obviously never seen Earth.

Without revealing too much, the plot has to do with the fact that just like the ship’s load of disabled kids are people who were not wanted on Earth, its technology is a mix of highly advanced ai systems and crappy old computers, all of which have one thing in common: they were not wanted on Earth for various reasons, like poor quality or dangerous ai features. Even the staff are Earth rejects – selected convicts with relevant experience like child care and computer programming.

In a twist of absurdity, Earth may no longer exist at the time the story takes place. In the 21 years it takes the spaceship to reach the destination planet at near speed-of-light, 1100 years have passed on Earth and on the destination planet. Earth’s government that designed the mission, and which’s propaganda the BGs so zealously enforce, did so in an ancient past and human civilisation on Earth may have collapsed long ago.

The story follows Kea, a girl prenatally diagnosed with autism, as she grows up on the ship and later becomes part of a group of seven friends, all with prenatal mental diagnoses, mostly autism – nerds highly specialised and capable in each their area of interest such as computer programming, physics & astronomy, math, language, and politics.

The composition of the group is obviously a handy set-up for the dramas that unravel as they gradually discover the truths about the mission design and the general condition of the ship’s technology, and the ship’s government in denial. The friends all have each a unique set of abilities and vulnerabilities that makes them relatable, distinct, and highly useful for the plot.

 
My Opinion

I absolutely love the idea, the plot and the setting in space, in time, and in the design of the spaceship itself, as it is rotating around its zero gravity core with hydroponic labs and all its other other cool stuff on board (there is a drawing in the start of the book). And I love the thrill of such a whole alone-in-space-and-time society depending on crappy unpredictable low-budget technology.

 

Spaceship design by Erika Hammerschmidt and John C. Ricker: "Kea's Flight"

Spaceship design by Erika Hammerschmidt and John C. Ricker for “Kea’s Flight”

 
I also enjoyed the action parts, all the descriptions of the ship’s interior and its society on board, and the philosophical implications.

What I did not like much was the dialogue and the characters’ tendency to waste time talking about feelings, random thoughts, sex and interpersonal issues even in extremely urgent emergency situations. I felt like shouting SHUT UP AND FOCUS, and found myself skimming pages even in high-suspension action scenes to get on with the plot and past all the talk.

I also wasn’t fond of any of the romances. I do understand how they may be relevant in the story, given that the characters are teenagers coming of age, but at times it was like reading a teenage romance instead of a science fiction story.

Also, I found the book too demonstrative about its disability / autism advocacy agenda, almost propaganda-like, using the characters to provide explanations that would have been better left out, conveyed indirectly, or maybe put in an appendix because it somewhat undermined the authenticity of the characters.

 

Seal mic1 
[Spoiler alert:]

Continue reading

I Did All The Work! Executive Function Win.

I just cleared, swept and washed the floors in the living room, the two corridors, the bathroom and the kitchen. That may sound mundane, but seriously… The floors have not been properly washed in the one and a half years we have lived in the house, apart from the occasional spot-wash to remove specific spills. That is right. Now the floor cleaning tasks are set up in Todoist to be done every 2 weeks (let’s see if that is a realistic interval), starting today. And I did it.

Actually I had only the living room floor coming up in my agenda today, but once I’d started I decided to go on with the other floors and set them up as recurring tasks as well, starting today so they’ll always tend to come up together.

This is what my karma trend looks like: the top line, under 21 September, is full of green colour. All the green colour is the floors being cleaned today.

 
Karma 21 Sep 2013

 
Besides the green colour (=housework), there is pale purple (=ADLs), maroonish red (=pet care – that’s the daily dog walkie) and black (=paid work) in today’s Karma trend line.

The black colour is 3 household visits I made early this afternoon, which included five interviews, one unsuccessful visit, and a revisit to a previously interviewed household to clarify something. It is a bit unsatisfying that all that looks so short in the trendline compared to the other areas. After all, visiting people and undertaking interviews is much harder than housework, and I also think it took longer (I didn’t time the housework… I always time my paid work, of course).

I may suggest an option to weight tasks and have their Karma trend length adjusted accordingly to the feature suggestion forum.

Still, this is awesome. I got the work done! I didn’t get distracted! (too much…;-) I have been amazingly productive today, and while I’m tired, I am not more tired than usual. I just got more done. And now the rest of the day is totally and freely mine with no guilt about things I ought to do whatsoever.

Todoist: Massively Helpful Executive Function App

This is to bring attention to and complement Nattily’s great review of the Executive Function App Todoist. Todoist categorises itself as an online task management app and todo list, and I believe the nickname Executive Function App is coined by Nattily. Anyway, that is a beautifully accurate name for the job the app does, so I’ll keep that.

I’ll write this post partly by converting and rewriting my comments on Nattily’s post.

I decided to give the app a try last week after I read Nattily’s review, because I have long been looking for a system that can help me to get things done and make/keep order in my life.

I often feel like I am drowning in tasks I ought to do without being certain what they are, how many they are, and if it is even humanely possible to get a grip of the massive myriad of duties a normal, responsible adult life requires.

I need something which integrates all the different types of big and small tasks I need to do into my life in a meaningful, steady, ongoing manner. Not just a one-off cleaning frenzy, or brushing my teeth 5 days in a row. Not like this:

 

 
but an all-in-one-system. An everyday executive function manager that is so easy and hassle free so I’ll use it every day.

And this app works. It took me a while to set it all up, but I can say now, having used it for a bit over a week, that it has already massively improved my everyday productivity and sense of being in control of my life. So this is a warm recommendation.
Continue reading