Taking “Ought” Out Of Autism

Taking “Ought” Out Of Autism

Ought is a word I’ve heard too often in my life. If I had a penny for every time I’ve been told what I ought to be doing, how I ought to be behaving, I’d have enough for a nice new pair of shoes! Maybe not Jimmy Choo or Christian Louboutin but you know what I mean.

Ought is a word that does violence, imposing the speaker’s values on the recipient. It says that the person being addressed is in the wrong, that they must change to satisfy the speaker. It’s an insidious word, couching the statement in the guise of suggestion.

Being told what you ought to do can be harmful for autistic people like me who formalize sets of rules to govern our actions. It denies us the right to behave and express ourselves naturally: I’ve acquired a motley collection of inhibitions over the years as I have internalized the expressed preferences of those I’ve spent time around.

I realized a few years ago that all this was compelling me to try to pass as allistic, to mimic the behavior of those non-autistic people around me. I reduced my stims to barely noticeable actions, I’d push myself to stay when the environment was hostile — too crowded, loud or bright — and I neglected my self-care.

The result was that I’d melt down far too frequently, I would drink most evenings to try to shut off and relax. It was largely self-destructive; the way out for me was to learn to be more self-aware and to recognize my feelings, my mental and physical states. That led me to understand that I was trying to live up to other people’s expectations: what I ought to be like.

Discarding years of internalized guilt and shame about all the ways I’d been doing things “wrong” isn’t easy and I’m still some way from working through it all, putting it behind me. There’s a huge amount of anxiety involved in consciously facing the inhibitions and going against them.

Things like hand flapping, walking away to find peace and quiet, asking for accommodations; for example, moving to another desk at work away from distractions. All this goes against the grain of what I’ve been conditioned to believe, but it all has positive benefits for my well-being. And I’m learning to trust my own judgment about what is right for me.

Children Don’t Need Gendering

Children Don’t Need Gendering

There was a child who grew up with two brothers. This child would knock about in denim dungarees, build karts from old fruit boxes and pram wheels, climb trees. Closer to their father than their mother, they would watch avidly while he tinkered under the hood of his car, eager to get involved and often ending up covered in grease.

And there was another child, painfully shy, who would spend hours with only their toys as company in their bedroom while their brother and his friends would pretend to be cowboys, or Tarzan swinging on ropes from trees. This child hated to get dirty; would borrow their mother’s clothes and play dress-up, loved to help mother in the kitchen.

That first child was Anne, my wife, and the second was me. So much for gender stereotypes.

There is an argument used to invalidate the experiences of trans people which says that we are somehow not authentic because we didn’t experience growing up as our real gender. But there are as many different childhood experiences as there are different people. Sure, we are the product of our upbringing to a degree but playing with dolls as opposed to a football does not define one’s gender experience one way or another.

The real myth is that there is such a thing as a definitive childhood experience that all girls (or boys) go through, and that their gendered experiences are completely separate and unrelated. At the end of the lane where I grew up was a farm; there were four children: two girls, two boys. Apart from the boys having their hair cut short they were almost indistinguishable. Dressed alike in jeans and shirts they all helped with jobs on the farm: driving tractors, hand-feeding new-born lambs, rounding up the cattle for milking, shooting rats in the barns. Only a few hundred yards but a whole world away from my own experience.

What I have learned is that my childhood experiences have more in common with those of other autistic people than they do with any arbitrary collection of women or men. I can’t even see any relevance or practical use to gendering children, and yet Western society in particular is moving more and more towards a total binary division: just look at children’s clothing and toys. There is this prevalent meme that colors, styles, activities and more are gendered: that everything in a child’s environment is either masculine or feminine and the two sets must remain disjoint.

Even where there is an overlap society plays tricks with language, Nineteen Eighty-Four style, so that girls have dolls while boys have action figures; kilts are not referred to as skirts. It all reinforces the notion that there is but a single “correct” way to be a particular gender, and also that each one of us must be identifiable as either one or the other. Individuality is out, conformity is in.

But conformity is death to self-expression, death to the personal freedom to look and act naturally. Enforced through bullying and oppression, conformity harms. Instead we need to promote acceptance, to allow each person to be themselves, to let their personality be shown however they want, to let them enhance our world with their individual creativity. I believe we would all be richer for it.

Because One Post Wasn’t Enough: Acceptance, Love and Self-care: #AutismPositivity2015

Because One Post Wasn’t Enough: Acceptance, Love and Self-care: #AutismPositivity2015

I fear my traitorous mind;
Prized asset, golden treasure
In which lurks a monster:
One I cannot hope to control.

Lying in wait it watches,
Senses when I am weak,
Releases its psychic poison
Infecting me with fear.

As I lie besieged by doubt,
Assailed by anxiety’s forces,
I begin to believe its lies:
That I am alone, unloved and broken.

All that I have, all that I am
Lies scattered: small trinkets
Dot the empty wasteland;
I lie in pieces in this desert.

Furnace heat of merciless sun
Makes the very air dance;
All else is stillness and silence.
Laid bare I cannot hide.

But…

In the midst of this ruin,
In the eye of the storm of fear
There is a mote, a tiny seed
Holding my essence in trust.

Though the ground is barren
Where the beast has raged
I plant this seed of hope,
Water it with my tears.

I spend the last of my strength
To protect and nurture this spark,
I give all of myself to it
And rise again, renewed.

The monster has vanished,
The burning sun become a fount
Out from which streams the warmth
Of healing love from friends.

The barren wastes turn green,
Meadows and woodlands host life
Amid which I sit at ease,
Healing in these peaceful arms.

Married, With Aspergers: Acceptance. Love, and Self-care: #AutismPositivity2015

Married, With Aspergers: Acceptance. Love, and Self-care: #AutismPositivity2015

Autism Positivity Flash Blog 2015
Autism Positivity Flash Blog 2015

The national motto of France is “Liberté, égalité, fraternité” which translates as “Liberty, equality, fraternity”. It’s the reason for my advocacy, the end I have in sight. It’s a deceptively simple phrase that carries a wonderfully idealistic message: that we all have the basic rights to freedom, equality and belonging to a larger community.

  • Freedom means we are free to be our authentic selves, free to express ourselves in whatever way comes naturally.
  • Equality means our rights are the same as anybody else’s, our voices carry the same weight, we are seen as people who are every bit as valuable as anybody else.
  • Fraternity means that we are part of whatever community we live in, we have access to support and to community facilities.

This is what it means to be accepted. This is the least we deserve as human beings; this is our fundamental inalienable human right.

We aren’t there yet. Persecution such as that suffered by Kayleb Moon-Robinson and many others demonstrates that autistic people are not accepted by society at large. The message hasn’t gotten out yet: we are people just like you with hopes, dreams, needs, strengths and weaknesses. We need your acceptance; we need your love if we are to take our place alongside you so we can contribute to our shared society on equal terms.

This is why so many autistic people advocate on behalf of ourselves and those like us: we strive to educate and bring the understanding that is the gateway to acceptance. All you need to do is listen and learn.

Life on Pause

Life on Pause

It’s been a couple of weeks since I got a phone call from the Gender Clinic at Charing Cross to tell me my appointment that should have been next Friday was being canceled. The appointment that I’d regarded as a key milestone along my long journey to completing my transition.

For nearly seven months since my first appointment I’d been counting the days. I had it all planned: deciding what I’d wear for different weather conditions; picturing every step of the route from door to door; working on losing weight to get my BMI below the magic 30. It was a goal and I was so motivated to work towards it.

And then I got that phone call and had it all snatched away from me. In seconds my plans evaporated leaving me directionless, crestfallen, falling as the ground beneath my feet disappeared in an instant.

For now my life feels on hold: I’m just marking time until I receive the letter with a new date. I’ve felt anger (how dare that doctor suddenly become unavailable to see me!), sadness, despair, and finally this numb emptiness. For now I can only wait.