Women in Autism, Research Autism conference, London

I am currently sat in a conference about Women and Autism, set in International Women’s Week.
Being an adult female with autism doesn’t normally bother me. I would go as far as to say I love being me. My autism gives me a perspective on the world that helps me make better sense of things than people around me.
However today I feel my autism.
The conference opened with a welcome by Deepa Korea. Deepa is the Chief Executive of Research Autism, and has an extensive past with public and private bodies.
Professor Terrry Brugha gave an interesting talk about the research he has been leading into identifying autism in the general female population. They began by screening about 7500 randomly assigned households with a questionnaire based on popular autism diagnosis questions. A subset scoring higher than a cutoff were then questioned again with a more targeted questionnaire. The research found that the incidence of autism in the general population as tested with these standard tests does tend to reflect the rates given in clinical settings with regards to per capita and gender ratio.
The second set of speakers were students and staff from the Limpsfield Grange school in Surrey. These strong and smart young girls are fortunate enough to be in a very special school indeed. This school accepts them as they are. They have made a video about being a girl on the spectrum, and how they feel they are different, but equal.
This video and the talk with it perfectly fielded by the young women reduced me to a quivering wreck. I lost all my coping strategies one by one as I contrasted their experiences with my own. Normally I can deal very well with public situations, but as I saw these vibrant, friendly, accepted individuals so content with their school and friendships and so positive about their autism I fell apart.
By the time the break came I was unable to even ask people to move out of the way so I could escape for a smoke. I lost the power to look at people, to articulate, to do anything other than stand frozen, surrounded by a hubbub of autism professionals looking like a scared rabbit looking for a bolt hole. Thankfully a young girl who I later found out was on the spectrum herself identified my issue, and said “excuse me” to create a gap for me. I ran through it to freedom, and only realised what she had done when I reached the quiet outside.
I tried to talk with her and her mum when I came back in, but I totally broke down. No one had ever done that for me before. No one saw, understood, and acted without a second thought.
It’s after lunch now, and several outbursts of quiet tears later, I am coping OK with the other talks.
Sometimes it takes a random act of kindness to reduce you to your core. But it has made such an impact that I will remember this girl for a long long time.

Deaspification – the coping strategy rituals

I often find myself lost in thought. Last week the gas engineer came out to check our house complies with the gas regulations for the next year, in terms of equipment safety.

They have serviced the boiler every year since we have been here, they are a great couple, he works, she organises, and they are funny, professional, and just generally good people.

But as I sat waiting for them to arrive, I caught myself going through the “Deaspification” ritual that I assume is part of my coping mechanisms. Deaspification is a temporary condition caused by having to interact with people not on the spectrum who you don’t want to give you the “but you seem fine” speech.

I’m not sure how to put it in words, talking about this is new to me, so I will just Do My Best like a good “ex-guiding-movement-gal”.

My internal dialogue floods with questions to myself. Can you remember their coffee preferences? Black with none and white with one I think. (Wrong here, black with three and white with two for future reference, but at least it opened the conversation).

People who do not have an Autistic Spectrum Disorder like to think they are memorable. If you can go that extra step and remember names, and two or three information bits, then you are on track for being Deaspificated.
What can I remember about these people. Coffee preferences, the wife makes lace in her spare time, the son was going to come in the business, the husband has an intermittent bad back.
Now I have little things that make them feel I remember them and I am interested enough to store away things about them.

It gives me conversation openers. And the coffee one gives me an excuse to get out of the room. This gives me the initial space to flap (mentally) about the fact that there are people in my house that don’t live here. It gives me the time to recompose myself and plan my next conversation.

I don’t need to initiate conversation, but if spoken to, I can use one of my three other bits of information to divert attention from myself.

Phone rings, they have been held up on an emergency, will come tomorrow.

Breathe. Relax. Feel strange. When you have focused all your energies expecting something to happen and preparing for it, its hard to let that go, and move on. It’s almost as if you had waited in line for a ride at a theme park for several hours, and right as you get to the gate, they tell you it has shut and to come back next time. You want to argue, but know it is pointless. You knew it was going to be a scary ride but you had psyched yourself up for it, and not going on means that the thought of queueing tomorrow is worse than the actuality will be.

Another situation. Someone is being treated unfairly and is unable to represent them-self to the various agencies that need to be coordinated. On my day to day existence I avoid contact with authorities, I couldn’t function buying goods at a shopping checkout without a huge amount of prep time. But it is easier somehow to slip into the role of being an advocate for someone else. The problems are not mine, so I do not have that emotional investment about what happens if I mess up, and I am safe in the knowledge that even if I don’t help much, it’s still more than the person would manage alone.

It is all about roles. About acting. I know I can pass as a simulacrum of myself, or the version of myself that I let others outside of my immediate family see.

My parents and most friends do not know me. They know the me they see, they don’t see the bare me that my husband lives with. They don’t see the even barer me that is evident when I choose not to keep the coping strategies turned on. They see the Deaspification Model. The sum of the learnt behaviours, the situation analyst, the outcome of many failed attempts.

I just can’t see her.

I can see it now, the way she tosses her hair when she is nervous. The way her lips part briefly and her top teeth settle on her bottom lip when she is apprehensive. The way her eyes widen as she tucks stray hair behind her ear when she is faced with a situation that challenged her perceptions. The way she wrinkles her nose when she’s amused.
The changes in how she moves driven by her emotions.
I just can’t see her.
I know she is attractive, I’m not blind. Well not in the traditional sense.
She used to have the wavy brown silky hair that supermodels spend hours emulating before shoots. She had sculpted eyebrows, and the type of makeup that looks like none. She had an immaculate dress sense, and a self confidence that captivated many. Now she is older, less concerned with her appearance, rounder, but still secure with that confidence when she needs it.
Her voice is smooth with a hint of Welsh accent cutting through when she gets tired. She is smart with the degrees to prove it. She just feels like a fake sometimes.
I still can’t see her.
Sometimes I catch a glimpse of her in the bathroom, something that hits me with the recognition of the girl I still think of her as. Caught like her image in a photograph as a teen. I can see her in the photograph, I see her hair up, her lips red, a hint of a smile on her face. Large hooped earrings catch the light. I think it’s her great grandad’s 100th birthday. I know it’s her, but she may as well be a stranger.
I know her well. I know her every thought, hope, dream. I know all the masks and strategies she employs when she’s around other people.
But I can’t see her.
Sometimes she shocks me, a change in hair colour makes such a difference. The extra weight from a happy marriage hangs from her frame. Sometimes I see her and I don’t recognise her at all.
Her family are the same though. Her husband is tall, with long red hair, her children are various ages from 6 to early twenties, so they are easily told apart. Except in photographs of them when they were babies. Then they all look the same.
It’s always been like this for me, strangers in a familiar land. Strangers in my own house. Stranger in the mirror.
———
I have been faceblind all my life. I identify people in various ways. I call them markers. This is the sum of things that identifies to me who someone is. You all have them. I can sometimes draw huge leaps of identification from someone I knew as a child to the adult when people around me don’t recognise them. It’s amazing what doesn’t change with people. There’s a girl from school I knew who behaved like a mouse, she’s grown up now, full of confidence, definite swan from a cygnet. But she still moves the same. She still has the same eye colour.
Find a partner. You don’t have to inform them that you are doing this, but choose someone that’s sat near you. Roll up a paper tube like you used to as a kid. Embrace your inner pirate. Now look at them through the tube. They should be close enough that you can see one feature at a time through the tube. Look at their eye, now ear, now nose, now chin, now mouth, other eye. Look at their hair.
That’s close to how it is I guess. I can see the features, but they don’t form a picture. They don’t come together in my mind to identify them.
It’s called prosopagnosia.

The Great Hope (Fiction)

The obituary started with the usual commendations and accolades. Anyone reading could not fail to be impressed with the life being recorded in the two inch column on the most important page of the paper. But things weren’t exactly as they sounded.
The Colonel being commemorated wasn’t yet dead.
No one in the obituary pages was. Yet.
We believe that allowing people to sacrifice themselves for the greater good is important for the continuation of our race, along with the perfect birth rate it allowed us to survive in our land. Well, underland, anyway.
Many cycles ago we were forced to retreat deep underground to allow us to continue existing. Our planet had been visited by the great hope. Things were good, for a while.
The great hope allowed longevity, peace, the end of illness and famine. But it also brought with it a great shadow. What we didn’t know then was that there is always balance. Wrong and right, light and darkness, eternal life and… And what?
Thomas Leroy was one of the first to realise the risk we had taken by welcoming the new technology with open arms and no fear. We may never know why our ancestors chose to adopt the science without rigorous tests, but the results split our world, maybe forever.
Those of us that descend from Leroy and his friends ran deep within the land we had once rejoiced in. And now we were lost. Lost to the sun, the wind, the rains. Lost to our fellows and with luck, lost to the great hope.
Now there are only a few hundred of us, existing with old tech, eating fish and insects from the caverns and ice cold streams that run far beneath the feet of those touched by the shadow. Those who had become corrupted, in mind and body, living forever by hunting their own kind.
Our population has to be controlled. These tunnels can’t support much more than we have, and what we can support decreases every year.
We have to expand our lands or face extinction.
Some of the brightest minds on the planet were with Leroy, and our enclave has remained smart through the generations. Others weren’t so lucky.
I put my obituary down with a sigh and checked the display on the scanner. I still had a lot of land to cover before my death. Results were relayed back to the square, distance, temperature, humidity. If any of us broke to the surface, the tunnel would be collapsed behind us. We can’t risk the great hope penetrating our location, we can’t risk the contamination and possible betrayal.
You see, the great hope was misleading. We should have realised that the promise was empty, that the Golden Fleece was in fact just gilded. But we didn’t. Well, they didn’t.
I shook my torch to get more light, planted the repeater and charge and moved on.
The red earth around me absorbs the sound of my footfall, it’s so quiet you can almost hear the blood rushing through your veins. Sometimes that’s enough to end a sacrifice’s journey. Sometimes the lack of sound drives a person insane. Sometimes the brain invents sounds to compensate, and these lead the unaware in the wrong direction without care and attention to footing or path marking.
We aren’t expected to return. But I will. I know I can do this.
It’s been almost twenty ticks since I last saw another being. My rations are gone, and my water is as good as gone. At least I’m not injured. She was wearing blue. I’m not sure why that sticks in my mind so much, maybe it’s because all I have seen since is this red. Red floor, red walls, red ceiling. Well if tunnels have walls and ceilings that is. Even my fatigues are red from the dust I kick up at nearly every step.
My purpose. Yes, my purpose. I am taking tunnels taken by previous sacrifices. At some point soon I will come to a place that hasn’t been investigated yet. We don’t know what made these tunnels, nor how far they go on. We don’t know if they are still inhabited, somewhere by someone or something. We need to find out. Most don’t return.
I’m sure you’re wondering why we don’t explore in groups. We just can’t risk it. More than one person moving around can be detected above ground, and has in the past resulted in the loss of entire enclaves. In the square and homes we are protected by the shield. But too far out of that protection we put everyone we care about at risk. So we send out the sacrifices. We know that sacrifices rarely return. But what little information gets relayed can mean the founding of a new enclave, if the materials are found along the way to build another shield that is.
Ah here. The body of another sacrifice. Before moving past, I need to check for any rations (unlikely but there’s aways a chance), and send back the signal from their scanner to confirm their passing. This does two things, it lets the family know that the sacrifice has died honourably serving our enclave, and notifies my family (well if I had any) and superiors that I am still alive and progressing into new tunnels.
From here on in, I truly am alone.

FreeBMD and the family tree

This week a friend asked me to help her organise her family tree. She wants more detail than most programs allow, more than five or six generations visible at once.
The conversation led on to my own family tree. My uncle has been doing genealogy research for many years now, and that gives me a great place to start. Sadly my husbands family’s previous research is not available to us so I have the task of finding a route through a very common Scottish surname in Central to North Scotland. Luckily I found some information on his maternal line, so at least half of it is easier.
I came across a site, that is aiming to put registrars lists online. FreeBMD has extracts from quarterly published tomes of UK births, marriages and deaths. It is transcribed entirely by volunteers, and has been going for a long time.
I figured because I have a fair amount of time on my hands I would apply to join a syndicate of transcribers. We have a “quota” of a page a month, and each page has about 3-400 entries on it.
I haven’t received my first assignment yet, but I am looking forward to it. Hopefully if more people that sign up to do it means that the information I need may become available! My syndicate manager has transcribed over a million records himself.
The site is useful for finding out who married whom, as well as the standard births and deaths. Starting with quite vague information I was able to fill in a few gaps that really helped me on my way to updating the tree for my kids.

BBC News – Mark Duggan inquest: Jury reaches its conclusion

BBC News – Mark Duggan inquest: Jury reaches its conclusion.

I’m kinda annoyed at this. There is no reason in my mind that you can shoot an unarmed man dead because he “poses a threat”. If he’s unable to shoot due to not having a gun, or even if he did have the gun, there are lots of places on his body that would have prevented him continuing and enabled a capture.

  1. Did the Metropolitan Police Service and Serious Organised Crime Agency (SOCA) do the best they realistically could have done to gather and react to intelligence about the possibility of Mr Duggan collecting a gun from Mr Hutchinson-Foster? The jury found they hadn’t.
  2. Was the stop conducted in a location and in a way which minimised, to the greatest extent possible, recourse to lethal force? The jury said yes.
  3. Did Mr Duggan have the gun with him in the taxi immediately before the stop?” Yes
  4. How did the gun get to the grass area where it was later found?” A majority of 9 to 1 said it was thrown.
  5. When Mr Duggan died, did he have the gun in his hand? A majority of 8 to 2 said no, he did not have a gun in his hand.

So, 9/10 people said the gun was thrown but 2/10 say he had it in his hand when he was shot? Having read the wording on the jury’s form, I am really quite frustrated that it leads the jury to a decision.

Did V53 honestly believe or may he honestly have believed, even if that belief is mistaken, that at the time he fired the fatal shot, that he needed to use
force to defend himself or another

Talk about a whitewash. Literally. I do believe that the outcome of the incident would have been different if the deceased had been Caucasian.

Cancer? Meh

So about a month ago I went for a biopsy. Been waiting for the results ever since. It’s more annoying than life threatening I think, being a growth close to my eye, I only went to the specialist when it started getting closer to my eyelid. I get these results in a few hours, but it seems that my friends and family are more worried about it than me.

The way I see it, I guess, is that whatever the result is, nothing has changed. This is something I have had for a few years now, and even if it turned out to be highly malignant, its not going to shorten the remainder of my life, as that is already set.

Small Growth

Really bad picture, but meh, most of it was taken in the biopsy.

So it turns out, yeah, it’s cancer. Why does that word strike fear into the souls of those I care about? It’s a malignant basal cell carcinoma. Apparently 1 in 3 people will get one somewhere, although most often it is not on the head. The position is a little tricky as they ideally need to remove a 4mm area of unaffected skin around it, and then skin graft replacement tissue and somehow avoid messing up my eyelids.

As I keep telling people, I am more pissed off that my sofa is out of stock in Ikea.