Things People Said to an Autistic Person Like Me

This is something I wrote at that point when I had worked out that I am autistic and began to tell friends about it and get autistically obsessive about the subject.  I posted it elsewhere at the time - somewhere I knew that nobody would read it.  I just found it again and post it here without edits:

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Amazing how many of these things have already been said to me.  I know I talk incessantly about autism but I haven’t been doing it for long as it was only recently that I was able to admit this about myself after years of denial and even of shame.

On mentioning it for the first time to a small group of intelligent people from the local philosophy society I got the following reactions.  I’d said that I was seeking assessment to get this diagnosis made official.  The philosophers responded:

“But you don’t look autistic.”

“But isn’t everyone on the spectrum?”  That person went on to “prove” that he must be on the spectrum because he likes the Rubik’s Cube.  As if that proved a thing.  In any case, his best time was rubbish compared to my best time - from the year I spent with the cube in the early 80s using what would now be thought of as primitive solving techniques.

“But autism doesn’t even exist.”

I’m not always sure that the local philosophers are particularly philosophical.

A few days ago I was told that I shouldn’t “be doing all that autistic stuff” because it might affect my child.  As if I have any choice whatsoever about doing anything I’m doing to discover and accept myself.  And I have been told that I’m avoiding my family by “jumping on the autism bandwagon.”

Yes.  It will affect my child.  But there are a lot of things that people don’t know.  Long term this will affect my child and my family life for the better.  We talk about it, discuss it at length.  Coming out as transgender brought my family closer together in honesty, openness, compassion, the freedom to be who we are.  What we’re all going through in this autism exploration is having the same effect.  Yes, there are many challenges in all this.  But they lead to a much healthier way of living in this home - the sort of health that self acceptance and the unconditional acceptance of each other brings, the sort of health that means we can all be increasingly open and authentic in our difficulties, knowing that all we will get is support from each other.  It may be a strange thing but my coming out as transgender and now my self acceptance about autism has increased the support my child gets, the safety they feel, and the knowledge that they can be who they are and still have that support - and, giving no details, my child is not exactly “average.”

Yes.  It’s true.  People, well meaning, caring people, really say things like that. Not sure they have a great deal of insight into how this particular family ticks.  They speak from a position that is loving.  It is compassionate.  But it’s a position that lacks knowledge of the inner world of this actually quite amazing and complicated little family unit.

This particular friend feels that the label of autism will drive people like her away because it makes her feel that she will never understand me.  Which is totally backwards:

The label (as much as it is a label) should help her to understand me in a way that she couldn’t understand me before.  It should increase her understanding of me.  In fact it may show that while she may have never understood me before (Unintentionally I never gave her the key to do so) it will now become a lot easier to see me and know roughly how I function.

The only future problem there should be regarding understanding is that the label points to the fact that I will continue to have problems understanding other people.  The only difference accepting the label and the truth makes is that I no longer have to feel so guilty and ashamed about it.  Which should, in time, help with all relationships.

The video is over.  Youtube recommends others. I’ve seen one of the autism ones before when my child showed it to me.  It’s certainly the same video maker - I can tell.  I can’t recognise the person but I recognise the bookshelf behind her!

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Much has happened since writing that.  I've grown in knowledge of autism.  I've grown in knowledge of myself.  I've met lots of autistic people and found new friends.  I've grown into more self acceptance.  And it really has not been easy.  There have been very difficult times.  And I've screwed up more than once. Dealing with accepting myself as gloriously autistic is worthwhile and will lead to a better future but it's been the hardest thing I've ever done.  There is still much to work through and more to learn about myself and how best to live and learn to function and even thrive in this world.

Six weeks ago I was officially diagnosed as autistic which is good.  There are benefits to that beyond not having people refuse to believe that I might be autistic because a medical professional hasn't given me a piece of paper that "proves" it.  I didn't find a single person in the autism community who disbelieved me on account of not having a medical diagnosis.  But I found a lot of neurotypical people were unable to accept me as autistic.

By the way, the video maker mentioned at the end is Amythest Schaber.  She posted a video and transcript of a talk a couple of days ago that is really worth watching or reading.  You can find it at this link.  Highly recommended.

The only other thing I posted where I posted this was a haiku.  A company called Stimtastic offered the prize of a stim toy in a random draw.  To enter you had to post a haiku about stimming on a particular day.  I didn't win.  But here's the haiku:

Beads held; caressed, pressed.
Balance in centred comfort,
They become my breath.

How I love my beads.  And how I love the metal chains I grabbed at Autscape.  I wear one round my wrist most of the time and play with it lots and when the light reflects from the little metal links in the chain I can get lost and just hold them in front of my eyes until they become my entire universe and then the feelings of wonder and bliss might overtake the feelings of sensory overload or being socially overwhelmed.  My world shrinks to a tiny point in space and time and it's wonderful.  A year ago I would never have allowed myself to stim or to find this enjoyment.  Now I am learning to and learning that it is a part of who I am, a part to be embraced and celebrated rather than rejected.  A part to be lived even when it looks odd or when the social rules say I should act "normal."  There's still a part of me that shouts at me, "Don't stim, it's bad."  And still people who would prefer I didn't do it, that I wasn't publicly fiddling with a chain or getting lost in the light on it or chewing it.  From the video at the top of this post - I have actually had someone grab my hands and say "Quiet hands!"  But no, these hands weren't made to be constantly quiet.

Three months ago today was the last day of Autscape, four days that have changed my world. One day I may write about it.  There are so many things I should be writing about.

What Did It Cost to See My Sin Upon the Cross? - Part 1

I found being in church services yesterday painful.

I love the people.  Last night's sermon was great.  And it was scholarly.  It's not available online yet but it will be.  Last week's sermon is available and I can highly recommend listening to it on the MCC Newcastle website.  I love that community of faith and am inspired by people there and have a better life as a result of knowing them.

But being in the service hurt.  Like being repeatedly stabbed or punched in the heart and head.  It's not the people, not the tunes, not the loving family that the church feels like.  It's me.  It's my vastly changing faith.  A faith that is still changing and developing.

I think the problem is that for so many years I loved the liturgy.  I loved the doctrine.  I loved the story.  I loved the salvation tale.  The story told me what I wanted to hear.  For twenty years I built my life around the story, embracing the tale of my fallenness and of a purpose for this sinner who didn't deserve it.

I loved my faith.  At times I was obsessive about my faith.  There were times I could pray for hours.  Times I'd be at church an hour before services, sometimes even waiting outside until the doors were unlocked.  Times I'd spend that hour in silence - especially in my Catholic years, praying, knelt before the Blessed Sacrament, enjoying the peace and seeking a particular version of God in the peace.

I loved my faith.  Wild, desperate love.

And now I do not have that faith.

And so the liturgy, the prayers and the songs hurt as they are said and sung.

A song last night included the line "I'll never know how much it cost too see my sin upon that cross."

I used to love that line.  My sin.  Dealt with.  Nailed to the cross with a dying saviour.  I would be lost in wonder and worship of Jesus at the thought that because of him my existence wasn't hopeless, damned.  Because of him I could be set free from darkness - from myself, from my flesh - and walk in light and be transformed into his holy way with lashings of theosis, repentance, and reliance of his strength.  I could look at Jesus, dying for me, and fall before him for taking the eternal punishment I justly deserved because of my sins.  I could look at Jesus and trust that he would lead me to eternal happiness.

I loved that line.  But now?  No.

Why not?  That's something for me to write about at some length in the following post.  I've split it in too because I find I typed about 1,800 words - which seems a bit much for anyone to read in one sitting.  It seems a bit much to think that anyone will have the patience or interest to read it at all.

I plan to visit the Cathedral tomorrow with a camera so some time soon there may be a blog post of only a few words and several pictures.  Hoorah!

The Death of My God. And The Dancing Stars.

When Zarathustra was alone, however, he said to his heart: "Could it be possible! This old saint in the forest hath not yet heard of it, that God is dead!" (Nietzsche, Thus Spake Zarathustra)

GOD was dead

I had killed Him

Yet I turned to truth,

to light, to the real.

I sought the above,

the spiritual heights.

No God.  No God.

But beautiful, bountiful,

brilliant, blinker-breaking

boundless BEYOND.

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 Yet, even embracing God

I lived a lie.

God was still dead.

I still killed Him.

Those centred words describe something of my God, from the time I turned as a child from a Christianity that I didn't begin to understand, to the often unhealthy Christianity I embraced as an adult.

Nietzsche wrote:  "God is dead. God remains dead. And we have killed him. Yet his shadow still looms. How shall we comfort ourselves, the murderers of all murderers? What was holiest and mightiest of all that the world has yet owned has bled to death under our knives: who will wipe this blood off us? What water is there for us to clean ourselves? What festivals of atonement, what sacred games shall we have to invent? Is not the greatness of this deed too great for us? Must we ourselves not become gods simply to appear worthy of it?"    The Gay Science

Does this mean there is no God.  I don't think so - only that many of the concepts of God that we have used are dead.  Or dying.  They were too limiting.  If God is truly God, then God is bigger than any human words or thoughts or imaginations.  To contain Him in one book, one interpretation is to risk missing Him altogether.

To contain him in one gender - as I, following Christian tradition, have done here, is to risk missing Her or Them, to risk so much of what God must be being lost to view.

Nietzsche, in rejecting not just the concept but the entire exterior immense sacred, missed God and proposed other meaning, that man - the bridge not the goal - is something to be surpassed, and that in itself is a laudable aim.  Nietzsche wrote much that I disagree with, but his writing is often wonderful and his ideas challenge in a good way, and I recommend a slow read of Thus Spoke Zarathustra.  The book isn't too long - but the ideas are massive and can be seen trying to work themselves out in sizable aspects of 20th Century history and thought.

God is dead.  We have killed him in our thinking, our narrowness, mistaking our own blindness for clear vision.

I killed him.  And, looking back, as I have been doing recently, I find that I very often killed him more as a believing, theistic, Christian, worshipper than as an agnostic seeker of revelation and ever fresh insight.  It's not that Christianity is bad.  Christianity can be full of wonder.  It's not that Christianity is the God killer.  But my Christianity was often the God killer.  Too often I held so fast to dogma that I forgot that God is the God of play and that dogma, as Matthew Fox wrote, can at most only be the outline, the border of the fields in which we play. 

With the unexpected effects this year has had on all my beliefs and imaginations, now is the time for me to learn to stop killing God.  At this point I do not know whether I will hold on to a Christianity that most Christians would recognise as "sound".  But whatever happens I need to include the searching, the openness, the disquieted chaos, the recognition that the boundless beyond will always bring new thrilling surprises and transformations.

Just as Zarathustra explained, "One must still have a chaos inside oneself to give birth to a dancing star."

May we all find the excitement in chaos, in uncertainty, so that we can all give birth to dancing stars.