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.

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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.

Cooking for the lazy and poor.

I’m not a great cook. We have a kitchen about the size of one on a boat. It just about fits a sink and drainer on one side, and a washing machine and dryer on the other. No room for a fridge, that’s currently living in what used to be a cupboard. We don’t have a working oven as if you use it, the power trips out for the house.
I’m also hampered by my aspergers and my suspected fibromyalgia. I can’t plan meals so that things are ready at the same time, it hurts to be stood around while preparing and juggling different things at different times and the range of ‘sensory issues’ in this house make it a nightmare from the outset.
Take a nice simple spaghetti bolognese. First fry the meat. Then remove half of the meat. Now add onions. Now separate the with onions and without onions into two. Add tomatoes to one with and one without. Now you have one meat (no tomatoes, no onions), one meat (with tomatoes, no onions), one meat and onions (no tomatoes) and one meat with onions and tomatoes. It’s just exhausting.

So I bought a slow cooker a while back and it fell out of favour, but this week I made an effort to make sure my husband bought ingredients for it.
I started by using the MySupermarket app. It allows me to build a shopping list, compare it instantly with other supermarkets, and then export it as a list. Lists are essential with an ADHD husband, they stop the hours of standing in the middle of the shop trying to remember what it was that was meant to be bought, and also limits the ‘I see it so I’ll buy it’ tendency.
I did a search for some sensory friendly meals, and decided that it appears to be meat joints or bust.

What’s great about the crockpot is it’s not an exact science. You don’t have to follow every step of a recipe.
Even though my family are anti-carrot, they make a great base in the crockpot to stop the meat resting on the bottom of the pan. Quartered potatoes are also good.
If you are using a beef or pork joint, you can buy cheap, after cooking in the pot for 6-8 hours on low even the toughest joint is tender. It’s worth searing it in a pan first on all sides if possible.
You can cook baked potatoes at the same time, by wrapping with foil and tucking around the sides of the joint.
The most successful one so far (although so far everyone’s eaten everything!) is the chicken.

Chop up potatoes and/or carrots (and even onions) for the base of the pot. You need at least one root vegetable to ensure the meat is kept up when the veg cooks.

Unwrap the whole chicken (and remove any of the elastic straps), and make sure the giblets are removed. If you like these parts, they can go in the bottom of the pot too to help make a chicken stock for another meal. Stuff the cavity with a pierced lemon (stab an unpeeled lemon with a paring knife several times), or whole onion (peeled and with the top and tail removed). Add peeled garlic cloves if you want, I tend to put a couple inside the chicken, and some more tucked under the skin in places like the leg joints.
You can even put chunks of garlic butter under the skin.

Tuck the wings back (kinda make them into a triangle so they stay in place) and put the whole chicken on the veg bed with the breast DOWN. This makes the white meat even more tender.

I tend to like putting a blend of herbs on, paprika seems to be making it into every recipe at the moment, along with garlic salt, and flaked sea salt. Oregano is also good. But basically add what you want, or what you have got.

Run the spice mix on, add the wrapped baked potatoes and set on low for about 6-8 hours.

With most recipes I tend to count two hours on low as one hour on high, so if times short, you can cook on high for an hour or two and then the remainder of the time on low.

Now leave, don’t fiddle. Opening the lid will slow the cooking down a lot. You can check the temperature with a meat thermometer before serving, or go with the ‘poke with a skewer and check the juices run clear’ method. Not had too much luck with that though, as the juices drain through the meat while cooking. My usual method of testing the chickens done is: Attempt to pick chicken up by leg. If leg comes off in your hand, burning your fingers and splashing juice around inside the slow cooker, it’s probably done.

There should be enough meat after burning your fingers ‘carving’ it (don’t expect slow cooker meat to be cuttable, it tends to fall apart too easily) to last two days. Please refrigerate responsibly.

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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.

So @patientanon it’s all down to you.

Someone I thought had forgotten about me shared this blog on twitter yesterday. By coincidence I had loaded it up myself for the first time in a long time earlier that same day.
I’ve been going through a strange time. Loss of direction, loss of laptop, loss of income.
What I haven’t lost is my aspergers and the unique chance that gives me to carry on my life almost stress free. I don’t worry about the past, or the future, I can’t change them. But I can change me.
I’m not one for New Years resolutions, those over hyped promises to the world that get swept under the carpet within a few weeks of the New Year, but I do make promises to myself.
Before discovering that @patientanon had shared my blog, I was secretly and quietly googling “weight loss for lazy people”. I don’t want to lose weight by doing hours of exercise, I can’t really because my back is still messed up after a slipped disc knocked other things out of place. I don’t overeat, in fact most days I only eat once a day, and can’t afford to snack.
I am on enough tablets to make me rattle if I jump.
But that’s ok. That’s me. It doesn’t have to be the me I will be, and I’m not unhappy with who I am.
I am a woman in my late thirties, who despite everything got a Masters degree (final assignment sent in from a hospital bed). I am the proud mother of three ASD kids and step mother to two NT girls. We are owned by three fantastic cats. I am overweight, that’s just a fact. I do suffer from depression, but I’m not unhappy.
Ok right at this minute I’m not overwhelmed with happy feelings for the two kids playing on the Wii (bickering and crying in the background doesn’t help me focus on this post at all), I don’t like them right now, but I do love them.
Maybe I should make a promise to myself to blog more. Not that I think anyone reads it, and it appears a lot of my tumblr import posts don’t work properly any more, but I still have lots to say.

Thanks @patientanon. This one’s for you.

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New website

My cat bought me a domain name, so I now have a website. It’s not perfect, but it is functional and clear. I have no idea who I expect to go visiting it, but there we go. If you do visit it, or read this, please feel free to use the contact form to tell me what you want on there.

EDIT: I don’t have it right now, I failed to get enough money for it.