Tag Archives: Autism

This Is Autism

I live in the moment.
The immediate.
I stop to smell the roses.
I also smell burning way before anyone else (other than another autistic person, perhaps).
My husband affectionately called me a bloodhound.
I see order in chaos.
My filing system is chaotic.
I cannot work with it in any other way.
I systemise everything in my life.
People talk to me about their problems because I see solutions others often don’t see.
I think outside the box.
I am outside the box.
I form deep connections with people.
My conversation is not frivolous.
I get to the point.
I accept and respect without judgement.
I don’t conform.
I’m a vegetarian who eats fish, and chicken.
Oh and occasionally sweet and sour spare ribs, but only if they haven’t come from gerbils.
I believe everything I’m told.
I’m innocent, despite my experience.
I’m loyal.
I’m focused.
I have high expectations and hold myself to them.
I’m married to an autistic man.
We have an autistic daughter and (we suspect) a neurotypical son.
I love and protect my family with fierce, uncompromising devotion.
If it’s not logical, it doesn’t exist in my world.
Harmony calms me.
The sound of a hoover makes me want to scream.
23 degrees Celsius. No exceptions.
I am autistic.
This is autism.
Autism is me.
I’m not broken.
I don’t want to be fixed.
I’m blessed.

Written as my contribution to This Is Autism flashblog day 18th Nov 2013

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Filed under Aspergers Syndrome, Autism Spectrum Disorder, High Functioning Autism

12 Jun ’13: To be or not to be…?

I read an interesting blog earlier about the chameleon-like tendencies autistic women have and it set me thinking about my own role playing in life.

I’m a professional actor/singer.  It used to be a full time job but since becoming a mother (another role for another blog!), I just work weekends in a band.  My husband is a musician and plays in the band with me.  He once told me that when we first started dating, he would feel resentful watching my outgoing, flirtatious onstage manner vanish as soon as we finished the gig and got home.  He eventually realised, however, that I put on this extraverted, overconfident character in much the same way that I put on my stage makeup, and that it was an entirely different persona from the woman I really am.  He no longer expects me to maintain this charade at all times and I, in return, try to remember to bring out this alter ego at times for his amusement!

When I talk about ‘performance’ in a gig situation, I don’t just mean onstage. The ‘performance’ begins the moment I step out of the dressing room to face the public. In that respect it’s not much different from my ‘performance’ in other roles (when I worked in an office environment, for example, or when I go to play dates with my children). The common factor is that I need private time to prepare beforehand and a lot of down time afterwards to decompress. It’s why I’m so obsessive about making sure we have a private dressing room on gigs and that I allow enough time to follow my ritualistic preparation routine. It’s also why I’m usually completely wiped out the following day.

We play at many weddings. Thankfully, the obligatory small talk with the bride usually follows one of a small selection of ‘scripts’, with enough predictability to enable most of my resources to remain focused on maintaining a plausible amount of eye contact. Recognising my client throughout the evening, however, can be troublesome because I also have mild prosopagnosia – a condition whereby I don’t use typical facial cues to recognise people (such as subtle distances between eyes, nose and mouth, etc) but other cues (such as hair, height, build and apparel). This strategy generally works ok but let me down recently at a civil partnership wedding between two men. In the absence of a reliable cue (such as the big white dress!), I struggled to identify either partner the entire evening and had to keep asking bar staff and band members to point them out to me!

As far as onstage performance goes, this is generally high reward for not too much effort. I have a large number of pre-prepared scripts, jokes and carefully rehearsed ad-libs to keep the evening running like clockwork. I’m an aspie who does actually seek connection with people and this is one way I get to obtain that, on mass, on my own ‘safe’ terms. I’ve been doing most of this the same way, successfully, for 10 years. The band is a slickly running outfit with each member playing their part. Incidentally, we reckon many of the members of our band are aspies (or at least have many aspie traits!). I think it’s one of the reasons why we work so well together. We are each obsessed with perfecting our part and all enjoy the buzz of connection as a whole. Just don’t get us started on one of our special interests! 😉

This heavy reliance on role play to function in every day situations is repeated in many other areas of my life. I see where I seek out roles that let me connect, but with clearly defined boundaries and purpose, thus reducing the need for the scary improvised small talk that threatens to expose my weaknesses. Weaknesses that include attention deficit, delayed auditory processing and inability to read non verbal communication. Through these structured interactions, I meet most of my needs for companionship. The connection with and validation of my authentic self is now largely met through closed facebook groups for other adult women with aspergers.

Next post: Let’s talk about…

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Filed under Aspergers Syndrome, Mimicry, Relationships, Role Play, Work

2 Jun ’13: The day after

Yesterday, an 8 month long process of evaluation ended with the news that I have been officially diagnosed with Asperger Syndrome, an Autism Spectrum Disorder.

Looking back, I can now see a lifetime of signs that were missed; from twirling, humming, rigidity and obsessive interests to being bullied, eating disorders, depression and loneliness.

But why bother having an official diagnosis now, at this stage of my life, when a self diagnosis would have been enough?

Because Asperger Syndrome is hereditary.  My daughter is showing some traits and I can’t bear to watch her tumble and fall into the same black holes.  The sad fact remains that the current diagnosis criteria for Autism Spectrum Disorders, worldwide, is wholly based upon research with autistic males, who present very differently from autistic females.  Until more females on the spectrum are diagnosed and prepared to add their voices and experience to the pool of knowledge available, many more (particularly high functioning) autistic girls and women are going to be missed (or misdiagnosed) and continue stumbling blindly along in life wondering why they feel like they are on the wrong planet.

But that’s not the only reason.  I seek confirmation, validation.  Discovering I have Aspergers Syndrome has finally answered all of my questions.  More than half of my life, and a not inconsiderable sum of money, have been given over to extensive research and therapy to find out what is ‘wrong’ with me.  I now know that there is nothing ‘wrong’ with me, I’m simply different.  I perceive the world differently.  My brain is wired differently.  I have difficulties in some areas, gifts in others.  The relief is immense.  As immense as the burden of responsibility I now feel towards my young daughter.

I find myself wondering how different my life would have been if I had been diagnosed as a young child?  Would it have held me back?  Would I have limited myself?  Would I be the same person I am today?  I’m quite proud of many things, especially now I realise how much harder life has been for me compared with the more neurotypical population.  But there has been tremendous cost along the way. 

Do I wish I had been diagnosed as a child? 

Yes.

Next post: To be or not to be…

Other related links

Profile of adult females with Aspergers

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Filed under Aspergers Syndrome, Diagnosis, Relationships