the reason I jump

is an excellent book by Naoki Higashida, subtitled One boy's voice from the silence of autism (isbn 978-1-4447-7677-5). As usual I'm going to quote from a few pages:

The Reason I Jump unwittingly discredits the doomiest idea of received wisdom about autism - that people with autism are anti-social loners who lack empathy with others. (Foreword)

I very quickly forget what it is I've just heard. Inside my head there really isn't such a big difference between what I was told just now, and what I heard a long, long time ago.

What makes us smile from the inside is seeing something beautiful, or a memory that makes us laugh. This generally happens when there's nobody watching us. And at night, on our own, we might burst out laughing underneath the duvet.

When I see I've made a mistake, my mind shuts down. However tiny the mistake, for me, it's a massive deal. Once I've made a mistake, the fact of it starts rushing towards me like a tsunami. And then, like trees or houses being destroyed by the tsunami, I get destroyed by the shock.

There are times when I can't act, even though I really, badly want to. This is when my body is beyond my control.

When I'm jumping, I can feel my body parts really well... and that makes me feel so, so good. By jumping up and down, it's as if I'm shaking loose the ropes that are tying up my body. When I jump I feel lighter.

It's not quite that the noises grate on our nerves. It's more to do with a fear that if we keep listening, we'll lose all sense of where we are.

My guess is that the despair we're feeling has nowhere to go and fills up our entire bodies, makes our senses more and more confused.

When you see and object, it seems that you see it as an entire thing first, and only afterwards do its details follow on. But for people with autism, the details jump straight out at us first of all, and then only gradually, detail by detail, does the whole image sort of float up into focus.

Numbers are fixed, unchanging things. That simplicity, that clearness, it's so comforting to us. Invisible things like human relationships and ambiguous expressions, however, these are difficult for us people with autism to get our heads around.

I understand that any plan is only a plan, and is never definite, but I just cannot take it when a fixed arrangement doesn't proceed as per the visual schedule. Visual schedules create such a strong impression on us that if a change occurs, we get flustered and panicky.

We can put up with our own hardships okay, but the thought that our lives are the source of other people's unhappiness, that's plain unbearable.

Responsibility

I had the pleasure of attending the Agilis conference in Iceland recently.

Christopher Avery gave an excellent keynote and spoke about the difference between accountability and responsibility; you are accountable to someone else but responsibility is personal.

He presented his six step ladder of responsibility:

• Responsibility
• Obligation
• Shame
• Justify
• Lay Blame
• Denial

For example, I'm typing this in TextEdit on my Macbook whilst on a train to XP Day. The font is small and my eyesight is fading. For a moment I struggled to discern the tif in the word Justify. I could almost hear a tiny voice inside my head starting to blame. But then I jumped to Responsibility because I realised the fault was not with TextEdit but with me. I simply enlarged the font size.

Christopher handed out a sheet expanding a little on the six step ladder above.

• Responsibility is owning your ability and power to create, choose, and attract. It's about your ability to make a response - to respond.
• Obligation is doing what you have to do instead of what you want to. As always, if you listen carefully, you can hear this distinction in patterns of speech "… but I have to …".
• Justify where we attempt to rationalise the blame, to use excuses for things being the way they are; we make things just in our mind.
• Shame is laying blame on oneself (often felt as guilt).
• Lay Blame (which is not a French verb ;-) is holding others at fault for causing something.

My son Patrick has Asperger's Syndrome and he has a strong tendency to blame. For example, if he bumps his elbow on the door he gets angry and blames the door. He finds it very difficult to move past this blame, to get inside a positive feedback loop which helps him become less clumsy. So I think laying blame is more than holding other people at fault, it can take the form of blaming anything - anything except oneself.

Accu conference charity book stall

Once again a big thanks to everyone at the accu conference who took a book and made a contribution to the two charities - Water Aid and The National Autism Society this year. The total raised was a smidgen under £600 which will be split equally. Thanks also to my son Patrick (he has Aspergers Syndrome) for lending me the safe. And thankyou too to several people who brought some books for the stall during the conference. I plan to repeat the stall again in 2012.

Acting and thinking

I while ago I was waiting for the Reading to Heathrow bus and I got chatting to a very interesting lady called Suzanne from Germany whose son also has Aspergers Syndrome. For some reason I mentioned the Buckminster Fuller quote which goes something like:

It is is easier to act your way into thinking differently than to think your way into acting differently.

She said that thinking is a frontal cortex activity which is a relatively recent part of our brain, and that acting is done by much older parts of the brain. She also said that when there is fear the frontal cortex shuts down - we act using the older parts of our brain.

Accu charity book giveaway

Many thanks to everyone who took a book and contributed. I'm now about 200 books lighter and the house is about half a bookcase lighter too. Thanks also to my son Patrick (he has Aspergers Syndrome) for lending me the safe. Several people also contributed but did not take a book (clearly they also have too many books already) including the famous Henney-Lakos £20 bet winnings. The total raised was £330.20 which will be split equally between Barnados and The Autism Trust.

Many people suggested bringing some of their old books to next years accu conference so we can have an even bigger Charity Book Giveaway, with even more selection. Please contact me if you'd like to contribute - I'll keep a list of bookworms so I can send reminders a few weeks before next years conference.

When technology pisses me off (2)

A Buzz Lightyear DVD this time. My son Patrick has Asperger's Syndrome. He likes to watch the same film over and over again. He likes to watch the film over and over again. Not the adverts. Going to the cinema is not like watching a DVD at home. DVD's that won't let you skip the adverts when you're watching the DVD for the umpteenth time are RUBBISH