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.

Twitter Autism Day

Autism Twitter Day

So I should have blogged about this before it started, and I am sorry.
Today a group of people, across many countries came together using social media to raise awareness of, and support for Autistic Spectrum Disorder, and related issues.

If you are interested, you can keep up using #ASD on the twitter search, and joining in the conversation, and listening to the speakers.

I have gained a lot of followers today, @Araldia and something that came up was that many people are interested in how I managed to get to 31 without letting anyone else diagnose me as Aspergers.

I have well established coping strategies that I use when dealing with Neurotypical people, but it is hard for me to think about the order in which to write, so please, if you only comment on one post on this blog, pick this one, and let me know what situation you are up against, and I will blog within 24 hours where possible how I dealt with similar issues, and how our Aspergers son, our ADHD son, and my ADHD husband deal with it also.

Maybe what works for one of us will work for you?

rdos
So someone in the comments asked me about my aspie profile from this site.
While I do not advocate self diagnosis, I feel that this tool a good way to identify possible things that can be then looked into further.

I do not feel, as you can tell from the title of the blog, that Aspergers is a disability.

http://www.rdos.net/eng/Aspie-quiz.php

This one is different to most online tests, as it is measured not on the questioners bais, but on the weighted response of those with an Autistic Spectrum diagnosis, and those with no issues at all (Neurotypical).