Month: April 2014

Expressions of PosAutivity #AutismPositivity2014

Expressions of PosAutivity #AutismPositivity2014

by alexforshaw ♥ 11 Comments

Autism Positivity Flash Blog 2014

In the three-or-so years since I started this blog after recognizing I was autistic, I have come a long way in my understanding of autism and of myself. I have found myself, together with other autistic people, parents, advocates and allies, as a member of an extended online community that in my experience sets the standard for friendliness and mutual support.

Most of all, I feel fully accepted by my peers for who I am. Among my circle of friends, most of whom I have never met in person, I feel safe. These online spaces — blogs, social media — are a kind of refuge to which I can retreat when Real Life threatens to overwhelm me. In honor of that here is my contribution to the 2014 Autism Positivity Flash Blog.

Threads

Like the Norse of long ago
Whose Norns would weave the threads of lives,
Warp and woof and who could know
When theirs would end with flashing knives,
Live your life from day to day
As if each sunrise were your last.
Friends and love: for these I pray;
All else is moot, the runes are cast.

“God does not play dice,” it’s said,
And Chaos rules the universe.
‘Til the day you wind up dead
You play the hand you’re dealt at birth.
Should you feel you have no choice
And all is written in the stars,
Listen to your inner voice;
Accept yourself for who you are.

New threads join: new friends, a wife,
And how it ends I cannot say.
Grasp the threads that form your life
And weave your pattern your own way.

Coda

Discovering that I am autistic was a positive experience for me. I was finally able to understand why I am different from so many of the people around me. It gave me a structure on which to build my self-understanding. From understanding grew acceptance which blossomed into love: I love my autistic self.

As I have mentioned many times before I have made a number of friends within the autism community. From the first person with whom I connected online, Bird, my circle grew and there are too many loving, supportive friends for me to mention them all. But it seems unfair not to recognize at least some of the people who hold a special place in my heart. So, in no particular order, …

(I know there are many people I have not mentioned, and I apologize to those I did not list here.)

Do Not Disturb My Circles

Do Not Disturb My Circles

by alexforshaw ♥ 18 Comments

I’m not very good at planning ahead, considering consequences of my actions. I exist in the present and the past; the future is too abstract to engage with. This is an executive function deficit. I am poor at planning and organizing my life, and cope with this by relying on routines. Running round the same circles day after day.

Μή μου τοὺς κύκλους τάραττε! — Ἀρχιμήδης
(Do not disturb my circles! — Archimedes, popularly supposed to be his last words)

This works well enough under normal circumstances, but a recent change in my life — gender transition — has disturbed my circles, my routines. The old familiar sequences I used for years as a male to get ready for work in the morning are no longer completely applicable to me as a female.

When I don’t have an established routine in place it takes me a long time to complete a task. I spend more time thinking about the various steps I need to complete than I do actually completing them — like I said I’m not good at planning. Every step along the way between getting out of bed and leaving home to go to work must be consciously considered and executed.

More than that there is a feeling of unease, of insecurity. Having no routine to rely on means I constantly view it as an unfamiliar situation, and the unfamiliar makes me anxious. Anxiety makes it more difficult to think clearly about what I am doing, makes it harder to plan what steps I must take.

When I have a routine I do not need to think about what I am doing: force of habit guides me through the sequence of steps effortlessly. I refer to it as being “on autopilot”. And like an autopilot I am unable to handle the unexpected: changes. Those times when the pilot must step in and take manual control.

For over two months now I have been struggling to establish new routines to replace the old ones. It is a slow process, requiring a patient, incremental approach. But I am getting there. The components that will build my morning routine are becoming established, steps are being aggregated into short sequences. I am now at the stage where I can start to join these components into a seamless whole.

It still took me over two hours to get ready this morning, with about an hour of that being spent thinking through what my next moves should be: this is progress. I believe that within another few weeks I will have learned my new routine and will no longer have to think about what I am doing every morning. I will be able to cope again.

My new circles are close to completion. I hope nothing disturbs them.

Thank You, My Friends

Thank You, My Friends

by alexforshaw ♥ 4 Comments 
      There              are so
  many    people   I have      come
to know since I started blogging, and
I want to express  how much they have
enriched my life. The sense of family
 I feel within this online community
  gives me strength. Acceptance and
   love are the greatest gifts one
    person can provide to another
      in this world. Through the
       medium  of our words we
         connect and come to
           understand that
             we are never
                alone.
Facing Mortality

Facing Mortality

by alexforshaw ♥ 31 Comments

Sometimes things happen that are beyond your control. Bad things. You can face them, try to deal with them, or you can hide in denial.

My wife, Anne, has a number of illnesses and has been finding things increasingly difficult since the end of last year. We haven’t been out socially since New Year. In fact the only times she has left our home since then have been medical appointments.

She has always been strong-willed: that is what has gotten her through this far. Through traumatic events, through heart attacks, through cancer treatment. Through all of that she has kept going. When she suffered necrotizing fasciitis in her spine resulting in major surgery and it was not certain if she would ever walk again she never gave up, pushed herself and regained her mobility.

But there are limits. She saw her doctor earlier this week, and he was in tears as he told her that, basically, there was nothing that could be done beyond adjustments to her medications. She has emphysema and cancer, either of which can be fatal. But it is her heart that is the weakest link. It is most unlikely that she will see me complete my gender transition to fully become the person I am inside.

She who has always handled fear face-on, fighting with all her strength, has little strength left. She is truly afraid, not of dying, but of losing what independence she has. She copes with her pain very well, rarely becoming angry or upset. She hates to be an object of pity and hates to think that she will have to rely on others, primarily me, to care for her when she is unable to care for herself.

She has become afraid at the thought of going out socially. Afraid that people will show pity or treat her differently. That they will see that she looks ill.

These past few days since she saw her doctor she has been trying to face the fact that her illnesses are getting the better of her. Her years of denial have come crashing down and she is finding it so hard to accept the stark reality of her situation. To face the overwhelming probability that she will never feel better, that she will deteriorate over time. To face the fact that she is mortal, that the clock is ticking, and that her best days are all behind her.

She draws strength from her faith — she is Catholic — and that is a great comfort to her. She also finds comfort in my presence. I can’t make her better. I can’t take away the pain or ease her suffering. I can only be here so that she is not alone.

The World (Autism Awareness Day) is Not Enough

The World (Autism Awareness Day) is Not Enough

by alexforshaw ♥ 2 Comments

Today is World Autism Awareness Day, twenty five years on from when it was first set up by the UN. Twenty five years of little voices being lost in our noisy world. There are days for this, weeks for that, months for the other; it’s impossible to keep up with them all. And the majority of people aren’t even aware.

Many Autism advocates and allies are campaigning for much more than awareness. We’re not content with awareness: we want nothing short of acceptance as our right. That is a worthy goal, but for me it still falls short. I have been inspired by tweets from my friend @SoniaBoue calling for Autistic Pride.

I am proud to be Autistic. It is an inseparable part of who I am. I want to celebrate my Autism, dance in the street and party, hang banners from the buildings and lamp posts. I want to happy flap amidst rainbows and shiny things.

For many people outside the Autism community we are objects of pity, defined by our differences and limitations. Autism Speaks (and others) have been very effective at portraying us as tragically broken. But the real tragedy is the ignorance and fear they have created.

We are people. We have the right to be treated with respect and compassion. We have the right to equal treatment, the right to a presumption of competence, the right to make independent choices about our lives. We have the right to be proud of who we are.

I’m not going to plaster my profile with various symbols purporting to symbolize Autism. Instead I am just going to say this,

I am Autistic and I am Proud!