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.

Sensory Overload - An Autistic Hell Day And A Difficult Recovery

Yes.  Yet another autism post.

This was written long hand in pen at six o'clock this morning.  I have thought hard about whether to type it up and share it, without any editing because of the nature of that writing.  OK, so I admit one edit because the original was just planted onto the page in one long paragraph so I've separated things out to make it more readable.  This writing is part of a course I'm starting on unlocking creativity, a course that will be wonderful.  But the pages of writing every morning - yes, EVERY morning there's this amount of writing, in pen, on paper - aren't really meant to be shared.  Today I am breaking that rule.  Because this may explain part of my life to people who can't see it because it's not visible.  Here I share a little of what sensory overload can mean to me.  The effects of doing something I wanted to do - and to be able to do.  It is very nice to be able to admit to all this and to be honest with myself and others.  It is horrendous that my unconscious coping techniques and defences took a running leap off the nearest cliff when I started to examine them and bring them to light.  Right now, things are fucking difficult.  I'd say "Excuse my language," but really, don't.  I can't be British and polite and stiff upper lip about this without being dishonest about the whole thing.  And if I'm dishonest about it then what really is the point of me talking about it at all.  Here goes:

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There are moments when I wish autism could go and take a flying fuck out of my life. Last night. And this morning. Moments when it would be nice to be able to do normal things, the simple things that normal people do, without it turning into a living hell, without having to retreat and recover until hell subsides.

Yesterday I spent time with people. Unexpected people. For maybe 45 minutes in a noisy bar. Thankfully not the first bar we entered which was too much for me in seconds. I try to act normal for the randomly met people. But it's so hard when everything else is happening, when every second is an inner pain and every moment an overload of sensory input. I try so hard but it is hell. And I just don't know the social rules. Didn't really know how to function and that would have been the case even if we have all been on a deserted mountain with only the sound of the breeze through the rocks and the heather to keep us company.

Perhaps I should have said no, and not done it. But damn this. I want to be able to function in a reasonably normal way. I know I wasn't. I know I was finding communication tough. Drifting into a mode where every word is forced and where being non-verbal is the option I want to take. It was nice to be with a very verbal person so I didn't feel an excess of pressure to talk, just guilt for not talking enough and drifting into stimming with the sleeves of my top in order to stay relatively centred.

Yes. I want to be with people. But I need to learn to say no. To be totally honest and say “I am autistic. I choose not to do this because it is harmful to me.” “I am autistic, and while this may be normal life for you, it is misery for me.” For my own well being I need to learn this.

Because it wasn't just that the situation hurt all the time. It continues. The bar is left behind. The noise, in the past. The people left. But that's not the end of it. My hell does not end the moment the situation ends. It takes me time to recover.

Last night was a quest to recover. Yes, there were good things. K's enthusiasm over stones. The blessing of a double rainbow. Writing to a friend. But the evening was recovery, still feeling the physical pain of sensory overload. Still in a state of shock, in a state where the terror and craziness and over-whelming chaos of that bar stayed with me. Every second, no matter how distracted, was a continuation of my pain. Just as a tuning fork takes time for the note to fade.

And last night I didn't see any sign of the note fading. I was in tears more than once because I still hurt so much. And because I know that there is nobody who can really help. Nothing I know that helps. As such times there is always the temptation to self harm because I know that would instantly relieve much of the stress, anxiety that can accompany the effects of overload. But self harm is out. I refuse it and don't ever want to walk down that path again.

Yes. There were good things last night and I hold onto those. But they were fleeting flowers in the fire.

I am fortunate to be taking medication. Because it does make falling asleep easy, no matter what state my head is in. The drug takes me gently away rather than it taking hours to sleep, until total exhaustion means sleep comes. Without that drug, last night would have been worse, have gone on for far longer and the pain would have been with me at every second of it.

So what of this morning? Am I recovered? Simple answer: No. I am not.

I do feel better than last night but the noise and the difficulties of the social area still with me. The noise is still humming through my head. Repeatedly the sounds clamour for my attention even though they ceased to exist in the existence of my outer world, fourteen hours ago. In my inner world they remain, in full surround sound. So glad we were near a window. It means that if I focus to the left of my brain it is a lot quieter.

No. I am not recovered. And I hate that. Fourteen hours and I am not recovered from doing a perfectly ordinary things that perfectly ordinary people do. Fourteen hours and my non-recovery makes me want to cry again for this shitty, shitty life. No. It's not shitty. This is only one side of it. There are many good things and my life is better than I'd ever thought it could be.

But to wake up still wounded from something so simple is scary. It's distressing. It's a picture of how limited I still am. And of how limited I might always be. And I have no been able to accept these limitations. I try not to punish myself for them but that's difficult. And I try not to get frustrated knowing there are normal things I can't do.

Get this through your head Clare: You are disabled. Deal with it. Accept it. And seek a life that sets you free in it.

Waking up like this isdistressing. When pain continues so long after the cause has ceased to exist. Irrationality rises up and says, “Snap out of it. It's just in your head.” Yes, of course it's just in my head. But that doesn't mean it isn't real.

I am so glad to have accepted this autism label – because at least it explains my reality. At least it tells me I'm not just a useless nutter at these times.

So today. I must continue to recover. And then go to church and be the social animal again, the smiling face welcoming everyone, the friend to everyone there. I so much want to be there, with my family who are the church. And I hope to recover enough by then so that I can be back in that quiet place beforehand.

Today is the day when I must start to learn to say no. To not worry if that makes me look selfish or anti-social. Today is the day when I must start to put my own self-care first so that I can care for others from there and not fail to care from my own hell.

I am autistic. It's time to say it. To BE autistic and explain that when I know something will do me harm. Today. Say No. Because the reason is sound.

Different ... But Not Less: Autism, Temple Grandin, GPs, Ignorance and Celebratory Pride

"Different ... but not less."

Never less.  That goes for all autistic people no matter how supposedly "high" or "low" functioning we are.

And it goes for ALL disabled people.

No disabled person should be thought of as less, demeaned as a lesser human being.  No matter how severe the disability.

And it goes for all genders, sexes, sexualities, colours, nationalities as well.  It goes for all groups of people who have had to fight, and often still need to fight to be treated equally.

"Different ... but not less." 

This tiny quotation comes from the closing speech in a TV movie about Temple Grandin PhD, starring Clare Danes.  I haven't seen the movie - does anyone have a spare DVD?!  This three minute video contains that speech.  It would be nice to think that approaches to autism have come a long way since the 1981 conference where the impromptu speech was made.

https://www.youtube.com/watch?v=YeWks6cgJ-k

If you want some extra entertainment try watching the clip while reading along with the English transcript youtube helpfully provides.  The software isn't quite perfect yet.  But as always, don't read the comments.  They include such things as "Can autistic women have sex?"  With the answer, "Dude, autistic people cannot have sex, they don't know anything."  All rather depressing that people think such things.

I happened to have a book by Temple Grandin in my bag when a GP said during a consultation, "How can you even think about autism when you can speak and are intelligent?"  That made it easy to respond with, "Hey, GP, look at this science book by an autistic lecturer with a doctorate.  GP, your views on autism are entirely wrong."  I find most people are amazed by that GP - surely everyone knows that there are plenty of very intelligent autistic people.  Everyone apart from that GP.

There is so much to know about the human condition that sometimes GPs don't know things.  The best GPs are the ones who admit that they don't know - and who find out what they don't know so that they can be of use.  The worst GPs are the ones who pretend they know everything.  Fortunately at least a couple of GPs here are open about it when there's gaps in their knowledge.

A GP my whole family likes fully admitted she didn't know about the referral process for adult assessment.  "But," she said, "I will find out and I will refer you and if there's any problem then I will contact you personally."

And the good GPs here are fully open that they don't know the ins and outs of the medical side of my gender transition.  But that's fine.  They are happy to follow instructions from the gender clinic.  And to a large extent they are happy just to follow my instructions, trusting me to know far more about it than they do.

Yes.  GPs do not know all there is to know about medicine.  That would be impossible.  But that's fine.  We cannot expect them to know all the answers.  Not knowing is acceptable, as long as they don't pretend to know everything and in doing so say ignorant things and mistreat their patients just as that GP said to us.

That's a lesson for us all.  We're all ignorant about things.  Let's accept that and be humble about our own lack of knowledge.  Let's all refuse to speak in ignorance as if we were the knowledgeable ones.  Let's accept that we really don't have all the answers, just lots of questions that we can't yet fully understand.

Regarding autism, I was ignorant.  Six months ago I knew really very little about it.  And although I keep reading, there is still a massive amount I don't know.  And although I have a few autistic friends, knowing them and learning of their lives doesn't by any means give me cause to say I know about the lives of all autistic people - because there is so much variation.  Six months ago I hadn't even come to the point of accepting that I too might be autistic - but I've covered that in another post.

I was ignorant.  Knowledge coming from the media, which often gets things wrong.  Knowledge coming from stereotypes.  Knowledge coming from seeing the sort of traits mentioned on Simon Baron-Cohen's autism spectrum test.  Basically - often dodgy knowledge and sometimes totally erroneous knowledge.


I was ignorant about autism.  I've been ignorant about many things.  Two years ago I knew virtually nothing about anything to do with transgender issues.  And yet I am transgender - so my ignorance really didn't serve me well!  There are many things I am still ignorant about and there always will be.  I am fine with that, as long as I am always prepared to own up to what I don't know and am always prepared to keep learning.  And I confess that on occasion I've slipped and haven't lived from a position of that humility.

I was ignorant about autism.  But that's fine.  Because, in the main, I was able to accept my ignorance about other people and not tell them about it and say all those things that well meaning ignorant people have said to me in the last few months. Unfortunately the same ignorance meant I could not accept myself.

And if I'm totally honest, I think my beliefs, somewhere deep down, ran contrary to that statement of Temple Grandin,  "Different ... but not less."  I was fearful.  "If I admit this, if I tackle the possibility head on, does that mean that I am admitting that I am not just different, but I am less?"  The answer, of course, is "No."  It's taken seeing myself plainly in the mirror of another person's life to get me to realise that I can accept the possibility and not have to fear myself.

Like Temple Grandin, like my still few openly (to me or the world) autistic friends, like all autistic people, I am different.

But not less.  Never less.  Never.

In fact, I am proud to be me.

I am proud to be autistic.

And actually in some ways I am glad to be autistic.

In all the difficult times I am still glad.

When breaking down from sensory overload I am still glad.

Beyond all that, there is so much good in this

And I am starting to recognise all these good aspects.

Get that?  I am GLAD to be autistic.

I could not imagine my being to be anything else.

I am glad.  I am autistic.  Good.  Celebrate.

Because it makes me who I am.

About My Breasts, Fucking Passing, And The Wisdom of Autism

Warning in advance:  This post contains completely honest, no-holds-barred, discussion of my breasts.  If that is going to offend you, stop reading.  Right now.

Not long after I had started wearing skirts publicly someone at church asked me an important question:  "Have you thought of chicken fillets? That's what I use."  The person who asked was cis-gender and was wanting to say that using them is OK, because plenty of women use them.  No.  I hadn't thought of that.  In the amazing rush of coming out to myself and going full time two months later, somehow I'd missed thinking of buying someone to give me the appearance of an obvious bust, the appearance of breasts that could have been there for years.

So.  I bought breast inserts.  I bought bras of the right size to hold the inserts in place and wore them with pride.  All of a sudden, the public Clare went from being flat chested to having C cup fake boobs that plenty of people told her looked good.

They really helped with confidence.  Because you know that when the idiots are staring at the shape of your fantastic chest they're not looking so much at your manly looking face so won't throw abuse at you as much.  Unless they look up and think they've just accidentally fancied a bloke and start worrying about their own sexuality.  At least that was the mental theory that boosted my confidence - whether it had any basis in truth is an entirely different matter.

But the time has come to change.

For the last couple of days I have ditched those inserts.  I've been walking with my chest being the shape it currently is naturally.  Yes.  This really is an entire blog post about my breasts.  There will be no photos included!

So.  Why?  Why have I taken the step of putting aside those confidence building, good looking, breast forms?  Am I mad?  Do I want to start getting more abuse again?  Why, Clare?  Why?  Isn't your life hard enough?

Three reasons.

One:  For the good of my own health.

I've now been taking oestrogen every day for seven months.  The dose is still low - in fact it's still lower than what the normal start dose would be in the USA.  And roughly two months ago I started to receive implants of goserelin, which is an anti-androgen.  Basically, it blocks the production of testosterone (and of oestrogen too but that doesn't affect me).

The hormone treatment is having an effect.  I am going through the soreness that any pubescent girl goes through when their breasts grow.  And the inserts affect this.  Yep, it all gets painful at times.  Not that I'm complaining, just laughing at the pain because it means the hormones are doing their job.

The inserts I have are designed to fit over breasts that aren't growing - either because someone wants to add to what they naturally have, or because someone has had a mastectomy and wants to appear to still have their previous appearance.

That's no good for me because my breasts are growing.  That process has begun, though just as in any other female puberty it will take years to complete.  (Too much information?!  If that's the case, why didn't you stop reading when warned at the start?!)  The inserts, because of what they're designed for have a concave back.  And that's no good.  To press growing breasts into them is to try to force them into a shape that they shouldn't have.  And now they're growing there is less room in that bra so the pressure is greater resulting in increased risk of growing misshapen breasts.

So for my own health - and my own comfort too because any woman can tell you that extra constant pressure on growing breasts isn't exactly a blissful physical experience - I have decided to ditch the inserts, regardless of how that changes my appearance or increases the perceived risks.  ("Perceived" is probably the right word, rather than "actual".)

Two:  Passing.  Passing.  Passing.

Readers of this blog will know that I recently have had to come to terms with being autistic, after so many years of denial.  This process has taught me so much and affected me in ways that I'll be working through for a long time.

I always knew that I had a tendency to rock, to stim, to do some of those typically stereotypical autistic things.  And I felt terrible about them and did everything I could to not do any of them.  Don't rock Clare.  Don't stim.  Stay still.  Stay very, very still in case the autism detecting T-Rex in your head sees you and devours you.  (Yes, autistic people CAN invent metaphor and play with words!  Even while often being over-literal about anyone else's metaphors!)

What I have noticed as I have begun to let go and let myself rock and pace and move and play with stim toys and so on - and I know that I have only begun, not finished - is that holding myself still was bloody knackering.  Letting go has been challenging but it's also being a source of freedom and I have a lot more energy through not fighting myself every moment of every day, consciously or subconsciously.

What I've realised is that for all this years I have been trying to pass as neurotypical.  And it's been such hard work even when denying my as yet unofficial diagnosis.  Passing.  Passing.  Passing.

And that realisation has come as something of a revelation and it's affected the way I can treat my gender presentation too.  Because I've been trying to pass there too - pass as reasonably cis-normative so I don't get abused, to look like what other people might think a woman should look like, so that I can claim the same privileges that any cisgender woman is automatically given.

With the autism I decided that, as much as I can manage it, I shouldn't try to pass anymore.  I should just be myself.  And that should be easy because I haven't got a lot to lose in my life and I know that the important parts of what I do have - my family, my church, my friends - are not going to be lost if I learn to be openly autistic, openly the person I am behind the masks.

With the autism I just haven't got the energy to pass.  I haven't got the energy to put on that act all day anymore.  To do so would be more crippling than it was when I didn't even realise how much I was doing it.  And I haven't got the desire to pass either.  I keep reading the writings of people who are proudly autistic and they have been influencing me so much.

So with the autism I came up with a catchphrase.  I penned it and proclaim it.  I used it in the last post on this blog.  I am massively thankful for the people who brought me to the point of proclaiming it.  And bear in mind that I never used to swear and would never have let such a phrase cross my lips in the past.  But ...

"FUCK PASSING"

Easier said than done. 

"Fuck Passing"

Because not passing is not conforming.  It's a risk.

"Fuck Passing"

 It's a letting go of security, of respect, of automatic privilege.

"Fuck Passing"

Yes, that's easier said than done.

"F.U.C.K P.A.S.S.I.N.G"

Because I'm still on the path of discovering what I am and what not passing might mean.

Yeah.

Fuck Passing.

I'm done with it.

I choose the harder life of standing out.

I choose the easier life of being free.

And that's fed back into my gender.  It's easy for me to say because I generally pass pretty well anyway.  I look reasonably like what people think a "woman" looks like.  But for gender too.  Fuck Passing.  I'm not going to get into all the discussions that could be made but these days my use of make up is minimal - far less than a lot of women wear every day.  And I realised.  In order to stay true to my little obscene slogan, the breast inserts had to go.

3.  Women.  What are they anyway?

To be brief:  Breasts do not make a woman.

That's obvious of course.  But if it's so obvious, why should I wear fake breasts?  Doesn't that imply somewhere along the line a view that breasts DO make THIS woman?  Aren't I just falling into some completely bullshit view of what a proper woman should be?

Yes.  At least to some degree - beyond all my concerns of security and self-confidence - that's what I've been doing.

So those breast inserts have to go in order to not stand against the misogynist world that would define a woman by her cup size.

That might be a bit radical.  And I know full well that in some ways that leads to questions about hormones and eventual surgery.  But there are other issues involved there and it's far more complicated than any discussion of sticking bits of silicon in your bra in order to appear "normal" or "acceptable".

So.  There you are.  My chest is worn as it comes.  And I walk with pride because this is who I am and this is what I am and this is the healthy, risky way to be.

And thus I had to buy new bras.  Those C cup bras will have to be put away, at least for the moment.  Who knows what the future will bring and what the medical treatments will do?  And thus I join the moans of all other women:  "Why are bras so expensive?" and "Why doesn't anywhere cheap sell them in my size?"  Honestly, I tried Primark.  Would anything fit?  Not a chance in hell!

It's a new day for my boobs.  What you see now is far less than what you would have seen a week ago.  But what you see is mine.  All mine.  And they are what they are and will be what they will be.

Fuck Passing.  Because the only person I want to pass as is me.

The Problems and Politics of Passing for a Proud, Autistic, Transgender Woman

What follows is part of what I wrote to someone today on facebook.  They were asking about some transgender issues, mainly about hormone treatments and surgery.  They weren't asking about "passing" though we'd mentioned it earlier in the conversation.  But I got sidetracked.  And when I get sidetracked into something that I'm passionate about then there's almost no stopping me, especially online (see the other sixty posts on this blog for evidence of that).  So here goes, some thoughts on passing, as written almost stream of consciousness in a facebook message but edited and tidied a little here.  And inevitably added to greatly in places.  There's also a section missed out because it mentions a friend whose life is nicely anonymous to a trusted friend in America but who doesn't need even a tiny part of their story plastered here for the world to see.

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Passing in some ways is a toughie for transgender people. We know we shouldn't have to pass. And we know that we should just be able to be who we are. But we also know that it makes life easier - I used to get abuse pretty much every time I left the house, from idiots and now it's a very rare thing. So we get caught up in the politics and pros and cons and the fact that some people will NEVER "pass" no matter what they do. We talk of how not being invisible, not passing, speeds up the change in society. And recognise that you've got to be brave to be the one standing out. I've gone through all this with trans issues and many people have written eloquently of the issues and of their good and bad experiences of passing, not passing, and of not wanting to pass in the first place.

And then this year I've been forced, in bigger ways than expected, to consider autism. And then recently I've been starting to read wider into other disability areas, something that is probably going to take quite a lot of time and reading and talking with people to truly get to grips with in any deep sense. And what I find when I read is that there is EXACTLY the same language.  So many groups of people speak of passing - the need to pass as "normal", the different reasons why people would like to pass, the need to not pass if we want society to change at any pace, the dangers to oneself of passing, the dangers of not passing, the politics, the thought that it is not the place of people to conform to society merely because they are different, but the place of society to learn to accept those people.

It's exactly the same language.  However, I am beginning to work out that there is a big difference though between transgender passing and autistic passing.  A whopping, massive difference that means there are two forms of passing that mean very different things.

Passing in trans land is to fit in to society's picture of what you should look like if you're claiming to be who you are.  Society says that there is a certain picture of what a woman looks like, sounds like, walks like and so on, or what a man is like and if someone appears in public who doesn't fit either of those two boxes then there will be a reaction.  To seek to pass is, in some way, to seek to fit into one of the two societal boxes.  Which is understandable, given that it makes life easier.  Passing says, yes, I am a woman or man and am proud of this but for whatever reason I'm going to seek to fit in with what you say that woman or man should be.  I'm pretty lucky.  I don't have to do a lot to pass reasonably well.  At this stage it's almost not an issue for me - though I'll keep up the hair removal that's already paid for and still spend four minutes a day applying makeup.  At this stage I almost fit into one of the boxes naturally.  But other transgender people will not be able to "pass" whatever they do.  And many transgender people don't fit in one of those boxes anyway - because those boxes aren't the only options for a human being to inhabit.

Passing in autism land is to fit into the picture of someone who isn't you, passing as neuro-typical in order to gain the privileges and simple life of an NT person. There can be lots of reasons for this.  A negative reason is shame.  Many autistic people are told that the outward signs of their autism are bad and they come to believe it and end up spending their lives trying to cover up who they are in order to avoid rejection, from others and from themselves.  A positive one - though one that needs to change in the future as society changes - is that sometimes an autistic person has to pass in order to fulfill a dream or to be able to follow a particular career. Not passing as neurotypical means almost automatic exclusion.

I think that's a big, big difference even though the language used about it is the same. Passing in trans land is hard physical work at times - not that I'm a hard worker.  Unless you are non-binary - which brings up a whole load of new passing issues - you don't pass by saying that your brain and soul are anything other than you know them to be.  You just change the physical. Whereas passing in autism land or in most mental health lands is a mental and emotional thing. And that's stupendously harder. Passing in trans land says "I am a woman (or whatever else) and proud". Passing in autism land says "I am autistic but for some reason I don't want to let you know, or know that I can't let you know because then you won't let me do what I want to do so I am forced into a pretence in order to have anything like the life I want."  Passing in (the binary bits of) trans land is thus all about externals, fitting how you present externally into society's picture of who you already are internally.  Passing in autism land is quite the opposite.  It's all about externals, true, but it's about fitting how you present externally into society's picture of who you are NOT internally.  Which is massively exhausting.  I'm only now realising that as I watch others who have to pass and as I let go of all the defences I'd built up against allowing myself to be me.

I think of those people who pass for neurotypical in their day to day lives because they have to.  At this point they have no real choice.  It's either pass as "normal" or do something very different with their lives.  Of course that's wrong, in many ways it is abhorrent, but just at the moment it's how things are. Hence the calls from many autistic people for autism acceptance rather than autism awareness. I hear the cry and see a local group say "It's autism awareness month, hey let's all wear blue." Except, I say, and my friends say, and those I've been reading online who are autistic and proud, "Hey let's don't because the organisation telling us to wear blue is one that we really, really want to stay clear of if we want to be proud as autistic people rather than thinking of ourselves as deformed."  There are lots of posts online about autism acceptance, such as this one by Amy Sequenzia, whose writing I quite adore.  The organisation mentioned about is called Autism Speaks and almost the first advice people have given me when I've asked is "avoid Autism Speaks."  There's loads of reasons for that - and if you look online you can find a ton of good autistic people who will tell you the many shortcomings of that organisation.  I am fortunate to have people around me who give me good advice and probably that single phrase "avoid Autism Speaks" set up the foundation of the ethos for so much I believe about autism and about wider issues.  Here's Amythest Schader again about that avoidance - I watched this with child earlier today, alongside a lot more of her videos.

So it's only really when dealing with the ASD things, letting the defences down and seeing what happens that I've been able to see just how hard I've been working, every day, to be what I'm not and appear as what I'm not. And it's only when that's happened that I've been able to turn around and say "Fuck Passing!" and believe it. This feels SO good. Physically it feels wonderful to let go and start to learn to be myself - to learn to be autistic as a wonderful blog post put it. Emotionally and mentally, it is a new freedom. Calling myself Clare brought great freedom - without which I wouldn't have been able to take this step. But this brings even more freedom. (By the way, I don't ever swear!  But Fuck Passing!)  Amythest Schader in one of her youtube videos puts forth the idea of "guerilla stimming."  Basically, to stim everywhere whenever you need to and not hide it.  Because society will not change while autistic people are invisible.  Just as the pace of change for transgender people has increased almost directly proportionally to the visibility of trans people in the last few years - and the conservative counter-reaction and shouting has increased too in its death throes - so the pace of change for autistic people and for people from a wide variety of excluded groups will increase with visibility.  To stim publicly and with pride and just to present yourself  as completely normal in your stimming is to change society.  If you don't know what stimming is, here's one of those Amythest youtube videos on the subject.

There was a point in all this that I could have taken the neurotypical blue pill and continued to deny what I'd always half known. I've taken it for years. But thanks to my friend, deep thanks to her, I've been able to find the strength, courage, and curiosity to take the red pill. Staying in Wonderland with all its challenges. Rejecting the false living. And what I'm finding is that this particular rabbit hole is far deeper than expected.

And this rabbit hole doesn't allow me to pass as normal. Because everything adds to everything and words like authenticity have to win. Yep. As you say, be yourself. Be proud. Be free. And so on.

Hmm. Sidetracked a little there and the whole Autism Speaks section was rather a sidetrack within a sidetrack. Kind of foresee that once I get myself a little more sorted I'll have no option but to be some kind of activist in a bigger way than tweeting and retweeting about it all. Actually this whole ramble about passing is a sidetrack and wasn't meant to happen.

Unrelated Thoughts on My (Lack of) God and My Autism

I've just written a couple of comments on facebook and find I don't want to lose them.  One was about God and faith.  The other about autism, particularly my recent discovery that it's OK to stim, even that it's a very good thing.  They are personal.  They're just about my life - and really that's not wildly interesting so feel very free to stop reading now.  And they're just ephemeral facebook comments, not classic literature to inspire the centuries!  But I want to save them.  Because one revealed something to me.  And the other can stand if ever needed as a reminder of joy, a reminder of why the path I'm on is a valuable one.

Firstly, God.  How very orthodox, to place God first.

Following on from the gorgeous song from the last blog post an old friend commented, through his experience and love.  When I lived closer to him years ago he would have been the only person anywhere who could possibly have convinced me to rejoin the Jesus Army and give myself to those people and that vision.  Finally cutting links with that church meant I lost contact with him and that saddened me.  But by the wonders of social media - and in this case through a wild coincidence - he's back in my life in some way.

As part of the discussion he quoted the Bible:

"For I know in whom I have believed,

and am persuaded that

 He is able to keep that which 

I have committed unto him

against that day"

A perfectly good verse to quote.  I can understand it and understand having a lived truth in which that verse can be grasped, believed, experienced.  I can understand it because I applied those words to myself for many years - before my faith fell to pieces.  I had a response to this from my life - although admittedly it may mean more in the context of the conversation.  A response of honesty, but certainly not a response to argue against my friend's experiences of the Divine.  A response that reveals to me some of the faith in my faithlessness.

I am unpersuaded. There are many times I want to walk away totally, to not believe in anything 'beyond'. Part of that is my pure but possibly imperfect logic. I have argued out the dogma too many times. And much is a result of all the unhealthiness of my faith for too many years, why I embraced it, and how I allowed it to curse me even while grasping onto it so much as my hope and meaning.

But yes, I don't know how to not believe. I may not exactly be orthodox in faith. Much of the time I can't conceive of the reality of a being who is god. But I cannot believe that there is no other, cannot believe that all there is is the universe and gravity pulling us forever into earth. Whatever happens, I fail to stop looking beyond - both to the beyond without and the beyond within. I can't let go. No matter how much I've tried, and no matter how much holding on has deeply hurt. And Spirit can't let go of me.

So here I am, joined the church that should have been my last and which I was meant to have left behind. Getting lost in worship when I can't hold onto that belief. I cannot walk away. It's impossible. Much of the time I am faithless or have a faith that most Christians wouldn't recognise as Christian. But I remain. Because, through everything, I am held by that which is infinite, that which is fully life, that which is the Real, is Being, is Truth, is Eternal. That which is the ground of love and the ground of fire.

Hmm. That last bit might sound suspiciously like faith to some people. You might even apply a label to those words, and say that they are God.

Secondly, autism.  Thoughts unrelated to the above.

Just saying.  Rocking, pacing, moving, stimming feel so damn wonderful.  So much better than forever forcing myself to be outwardly still, to sit without moving.  Some of it is restful.  Some of it releases.  Some of it is grounding.  And some of it feels like joyed strength flowing into me.  All of which comes as something of a surprise.

I have always rocked but almost never let it happen because I felt too guilty and shamed by it.  "It's wrong.  It's bad.  Sit still.  Be quiet.  Be respectable." Thank God these things can change.  Learning to lose that guilt, and guilt over some of the ways my brain is wired, is starting to bear fruit.  At last.

I know there's still quite a way to go in learning to be able to allow my body to move as it wants to.  Learning to be myself:  It's so difficult.  At times it's felt impossible.  I've been so near the edge through all this.  So scared at times.  Close to needing a psych ward.  But it's essential.  And after the hell comes the self acceptance and the renewed smiles.

That's all.  Two thoughts.  Unrelated.