My "Journey" to Diagnosis

Not really that much of a journey, mainly because I undertook if for my daughter rather than me.  As Deborah is autistic, I needed a way to get into her world, and I noticed that every time I talked about her to a professional, I ended up talking about ME, which was really embarrassing.

Having got a dx (quite unexpectedly and by chance) from an occupational therapist for sensory processing disorder and as a result taken medication which helped, I started to think about the idea more that I could be ASD.  I've talked about some of the brief flashes along the way.

The first time I asked a dr, they completely poo-poohed it, so it took me some time to come back to it.  I went and asked the dr who had referred Deborah for dx and then once I saw the neuro-psychologist was diagnosed myself.

So no real long, emotional journey to describe, just a huge bloody relief. Flashes of insight along the way, the more I listen to other autistic voices. There seems to be lots of people out there, searching for an ASD diagnosis as validation for various things, but I dont identify with them.  Their journey is emotional and sounds exhausting as they are trying to discover something about themselves.  But mine has been really quite straightforward and was made to help me understand my daughter better.

I think the amusing result was that I was  dx as ASD at all, as I felt my social etc skills were so much better than they might be, I was fully expecting to be dx with ASD traits, or anxiety or something else.  All of which would have been valid diagnoses in their own rights.  There is a lot of speak about so many psychologists are terrible at diagnosing female autistic's, but that wasn't part of my experience.

It helped me realise why I've always felt so much more male than female which was interesting.  Years ago I did a very simple on line test from the Natural History Museum which showed that my brain was very definitely male.  Being interested in hormones I repeated in when I was pregnant, when I was breastfeeding and about 6 months to a year after I stopped breastfeeding.  When I was pregnant and breastfeeding, I was very definitely female, and now I'm neither, I am right in the middle of male and female.  Baron-Cohen argues that it is possibly over exposure of testosterone in the womb that can cause ASD and that seems to suit me well.  I've certainly found socialising a lot easier since children, although as  might be expected, I leaning towards my special interest fields now.  Plus I've also discovered Facebook, and I find written socialising both easier than face to face and also that it  facilitates it.

The little flashes of autism insight are very helpful.  Listening to a reading of  "The reason why I jump" by  Naoki Higashida talks about the completely disorganised inner world of the ASD brain.  I always have a slight feeling of panic which I resolve by berating myself.  Thinking about it, its probably just lack of filter from poor executive function, and that is a useful way of looking at it as it will help me develop techniques for myself and Deborah.  Its not actually possible at the moment for me to look at this autism journey as just mine - it's a mother thing!

http://www.youtube.com/watch?v=wAJt6hEd3eg&feature=c4-overview&list=UUaNfyAY_YC7LElSQAd7uPmw   Is me and another autistic adult talking about our experiences of being asd.  The conversion to Youtube has made it incredibly quite, so not sure how easy it will be to hear...  But you do get to see my stims ;)

Storm in a coffee cup

Scaffolding being built.
The noise jars and slices me,
I wince and cover my ears,
and I see question marks in people's eyes.

Beautiful girl, you don't like it either.
But you a child, so you don't wince,
you don't control,
Can't waste energy on being social.

We go outside.
You are screaming and screaming,
I feel like the noise will end my world,
The clanking, the screaming, the distress, the people, the stares.

The smells, the lights, the textures of the pavement to navigate,
The light, the dark, the maelstrom of emotions.

I struggle to remain calm,
In my struggle I forget and speak to you.

You scream, and scream, the world is a big round o of your red mouth.

I collapse inside, my bones hold me up when my emotions have deserted me.

I kneel down and cling to you,
You cling to me,
We have the same need, the same feeling, the same love.

We cling as if lost in a shipwreck,
You stop screaming so much,
My emotions creep back and I start to listen.

We are one feeling, one emotion, one joy.
One love for two people,
One love for all people.

We go back inside,
Sit back down,
and carry on.

What else is there to do?

Learning empathy

Two nights ago, Michael had a very small rectal prolapse and Ian rushed him to A and E.  In my ASD rigidity I couldn't understand the number Ian wanted me to call as it was not one I'd come across before, and I wanted to call the local out of hours service.  Ian was too stressed to explain it was the new out of hours number (or something) but I called it, and in Michael went.  Poor lad was so terrified he threw up several times as he was screaming so much.  

Deborah was laughing at the noise he was making, and we were trying to explain Michael was sad, whilst keeping him calm, and supporting him.  Michael refused to leave the house without kissing Deborah good bye, and that's when she finally go it.  She was devastated once he left.

Luckily Michael was fine and continues to be so, although understandably reluctant to use the loo.

My big learning curve was that although I had always understood that people were worried when their children were admitted for day surgery (as I'd read Michael might be), I never really "got" the level of anxiety, until I experienced it myself.  Now I have that understanding I feel much more empathy for those in that situation.

Autism - empathy there, but learnt!

I'm lucky as I'm a Buddhist and try to practice to live out the principles of compassion and wisdom, so I'm in a mental stream to enhance compassion.  So useful for me as an ASD  person, there have been times before I started on the compassion training (and since, lets be honest!)  when I've lacked compassion simply for what I don't understand.  My experience this week was in empathy, but the basis of compassion helps me to apply my own feelings to understand those of others.  I'm quite shocked I'm still so slow in this, but that's just how it is.  At least I have the opportunity to learn, although i hope to learn quicker without mine or anyone's kids being ill next time!