Tuesday, 24 November 2015

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:


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!


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.