Sunday 16 February 2014

on flashing...

so, I was included in friday's flash blog but I was out. I had a fabulous valentines, by the way, I was at a queer classical music event and got home at silly o'clock (aka 3:15 am) because I don't have the good sense to get.off.the.bus at waterloo tube station (or not get on it in the first place, it wasn't really a useful bus). still, totally worth it.

writing the flash blog was terrifying, and (in my opinion) not my best writing. it's hard trying to make coherent words happen to someone elses timetable and agenda, even if their agenda is really close to my own, so I'd like to try and write the things that didn't fit...

...I was scared because no one reads this blog, so its safe for me to use it to anonymously scream into cyber space. the flash blog would (and did) bring more traffic, which might bring comments. I might like comments, but a few of the predictable responses to anything I might write about Autism would have really hurt me.

mostly, I'm talking about calls from Autism parents for me to check my "high functioning" privilege. this is a subject that has been covered by Autistic people before, but I want to unpack the batshittery of it here, for myself, in my anonymous cyber-screaming place.


  1. "high/low functioning" is a shitty thing to call someone, especially in an Autistic context where the person saying it will often use it to describe our ability to pass for NT, and thereby judge our personhood. to paraphrase Ari Ne'eman, we're "high functioning" when we "don't need help" and "low functioning" when we're "not worth helping". if you really feel the need to assign labels based on NT perception, how about we use more honest terms? like "user friendly"
  2. yes, I am user friendly. however, until I chose to describe specific events where I have communicated via my vocal chords you had no way of knowing that. there are many far more effective self advocates than me who don't speak most of the time, or at all. blogging is one of the most accessible means of communication for many Autistics, of all levels of user friendliness.
  3. no, I don't know what it's like being your hairdresser's sister's non-verbal offspring, but neither do you. or your hairdresser. or the child's parents. parents know how it feels to raise their child. that's all.
  4. not knowing what it's like to be Autistic never stops parents speaking for Autistics, because they are automatically seen as the Real Human Being in the situation. check your own privilege before trying to stop us telling our stories.
  5. less user friendly Autistics don't tend to call people like me on unchecked privilege for telling the world about our Autistic joys and struggles. they call us when we try to exaggerate the functioning binary that suits many parent's and charities narratives about the tragedy of Autism.
  6. I am well aware of my various privileges and oppressions, generally and in relation to conversations about Autism. the most relevant one in this case being British privilege in that I only have to deal with Autism $peaks on the internet when I'm feeling strong enough.
thats enough ranty stuff for now. I feel there was other stuff that got stuck in the marble effect, but I forget what. I might edit to add that in later...

oh, edits on NT allies.

there seems to have been a lot of progress in recent years within the English-writing internet. we has allies!

my sanity doesn't hold up to really following all the things I care about properly, but there definitely seem to be a lot more ND friendly blogs run by NT parents of Autistic kids than there were back when I joined AFF in 2006. this is great, but it also highlights how far we still need to go.

when I logged in after my flash blog was posted, there were no comments but there was a "+2". when I eventually worked out what that meant (the aspie tech genius stereotype? ha!) I was instantly star struck. 2 people had "liked" the post I wrote, despite my feelings that it was clumsily written/jumpy/predictable/didn't say everything it needed to. better yet, they're both outspoken allies to their ND kids, who have a thriving readership. and they approve of me!

that's fucked up. not what they're doing, my response to it. we need allies, and these two people are doing a hell of a lot for us, using their NT privileges of Being Automatically Seen As A Real Person and Being Able To Communicate Easily to fight for a more neurologically accessible world and bring other parents into the light. all social justice movements need allies, but all also need to be lead by the people that movement exists for. so, if you're an ally reading this (hi, by the way) I am striving to be less grateful, not because you're doing a bad job, but so we can all develop a healthier ally/oppressed relationship because in the future we're working for your attitude should be the default human setting.

if you are an ally reading this (hi again) and would like some suggestions on improvement...

...try to make your writing less kid-focussed. I'm not sure how to do this for many of you on a regular basis, as your main real life experience of the subject is your offspring, but we grow up, age out of what support was available, and remain Autistic. the first Autistic woman I saw on TV (and I watch most Autism documentaries, and live in a country that is not plagued by A$) was only last year, and only featured because her SON was Autistic. try to find out what would be helpful to Autistic adults in your area and spread the word via your platform, however small you think it is.

...continue to speak honestly about everything, the panic attack on the bus and the pretty bubbles. it all matters. it really does.

...try not to expect too much gratitude. many of us were expected to feel & act grateful whenever we were offered "help", even if it wasn't helpful, or it was a legal requirement, or, often, both. that sort of thing takes it's toll and makes it harder for us to self advocate. we really need to self advocate.

...we are not self narrating zoo exhibits. any education of NT allies or oppressors by us is at our discretion. most of you do seem to get that, but please spread that knowledge around.

ok, here endeth the lecture. good night allies, sweet dreams.

Wednesday 12 February 2014

Bursting bubbles

so, I finally heard about an Autistic flash blog before the deadline. not much before, but enough (I hope).

the theme is "love not fear". I am not a parent, so I can't really give advice on that. I can, however, talk about bath time...

bath time is wonderful. I can't sense time passing so I have to sit next to the bath and watch it run. I sit in the warm, bright bathroom and knit. my current knitting project is a lace pattern that I've just about memorised, so it's beautiful and engaging without being difficult. I sometimes find myself baby-talking at the beautiful stitches. when the bath is full, I strip off and carefully step in. I sit down and stroke the inside of the bath, dislodging the tiny bubbles. I watch the bubbles scurry to the surface. each one has a shadow, wriggling across the bottom of the bath, until the bubble bursts on the surface, producing a flash of refracted light on the bottom. my own, private, silent firework display. when I'm finished with the bubbles, I lay back, watch the ripples on the ceiling and let my mind wander. eventually, I also wash my hair.

I can also talk about catching a train to another city...

like most Autistic adults, I'm unemployed. this means I have to get an advanced ticket or I can't afford to travel at all. as mentioned above, I don't sense time passing. I also have no concept of left & right, my sense of direction isn't terrible, I just can't attach words to it reliably.

so, I have to get a bus, train then a tube to the station where my advanced ticket starts. if I'm late, my ticket is worthless. if I need to ask for directions, I'll need to translate them from left/right to mental image. most of the time, I'm going from kings cross/st pancras and I "see" them as 1 station until I come up from the tube. things are further complicated by tube strikes, distraction caused by excitable Glaswegian gentlemen and, occasionally, panic attacks.

I love my wonky brain. I'm terrified of messing up because of its limitations but I love it anyway.

I don't wish I was different, but I want & need a better world. when I asked her how she felt about me being queer, my mum said she was ok with it, but would prefer if I was straight because then my life would be easier.

she's right, but wishing I was straight is not the way to deal with that. if she's worried that I might face prejudice in employment, in health care, by the media and people on the street, she should be finding ways to speak up, challenge outdated attitudes and laws. changing me will never be the answer.

to fully love and accept the Autistic people in your life, stop separating them from their labels. it's not ok to say that the bad bits are Autism and the good bits are personality, it's all Autism AND personality. my creativity, stimming, sense of humour, time keeping, generosity, and sensory issues are all part of me and fundamentally Autistic. you need to love and accept that I'll be late, I'll bounce when I get excited and I never want you touching my hair.

you need to build spaces where we know we can ask for help without fear or judgement, and let us be in that space so we can re-learn how to ask for the help we need, which may involve working out what that help looks like and probably means being "ungrateful" for something you previously thought was helpful. we don't want to hurt you, we just need you to stop hurting us. if hearing that a particular attitude or therapy schedule hurts the Autistic person in your life is painful, I'm happy for you. you messed up an can now learn from that. if you were comfortable with that knowledge, you would be a monster. keep reading, keep learning, keep refining. love and acceptance is a process.