The sound of stigma: a journey across the rope bridge. #AutismAcceptance

March 27, 2017 § 13 Comments

STU_8279DPP_002

photo by Stu Allsopp

Preface:

Some autistics prefer person first language (though many sources suggest this is a significant minority), and some individuals and organisations use both person first and identity first language in an effort to compromise. I believe the latter is unhelpful in tackling stigma, while an insistence on person first language unwittingly perpetuates it.

This post takes as read the equal value of all human life in its infinite diversity, and the neurologically driven right to self-expression for us all. I won’t use functioning labels or talk about co-morbid conditions associated with but distinct from autism.

Autism is understood as a viable neurological difference with a distinct culture. Our contributions to the mainstream are significant but often overlooked. We face prejudice and barriers to access at all levels of social engagement and opportunity.

Intro:

Blogging about autism sometimes feels like being suspended above a battleground on a rope bridge. The warring factions are often parents of autistic children and autistic adults. Like many other late diagnosed autistics I know, I am both. Other parties such as charities and research bodies (those not autistic led) tend to fall into the same camp as many non- autistic parents. In general, thought on language about and priorities for autism are driven by the non- autistic majority. There is still genuine discomfort in accepting identity first language and allowing the primacy of autistic voices in on the contemporary debates about  autism which (crucially) lead policy, resources and research.

My journey:

When I first dipped into the world of autistic blog writing (as my parent self)  I was astonished to find so many adults writing. I hoovered up their words and gobbled them down. For something like four years I read everything I could by autistic adults to find out more about my child.

In the end I found myself. This in itself demonstrates the value of autistic voices – through each other we find ourselves and are coming to the fore.

Perhaps this is why I avoided conflicts (mainly). Occasionally I’d catch a bruise and glimpse the fray. I was a parent but I could see it all so clearly. The adults who wrote generously and eloquently about themselves were my child’s future – and I hope that now perhaps I can be part of the movement for change too.

I want to feel that my voice will count in this struggle for autistic voices to lead. Parents matter greatly ( I’m one – I know) but ultimately only autistics can speak from within about what it means to be autistic. This is bio/logically so.

Yet the spaces between us echo with arguments I can recite in my sleep. Person vs identity first language is a prime example. It is highly symbolic of the struggle for primacy but also an acknowledgement of autism as culture (as a viable neurological difference).

To each group the position on language seems clear. The other day I encountered a non-autistic person who thinks identity first language is rude to their autistic relative.

From this perspective using the word autistic denies the person and puts the focus on disability. (You can only really think this if you hold a negative view of autism and what it is to be an autistic person.)

This non-autistic person also thought it was okay to insist identity first language is insulting.

Personally, I think that was rude.

So the question is how to duck the ire and shift such barriers between us. Momentarily stumped I rewound my brain and located a now distant memory. And sure enough there was once a time when autistic was a harsh word to my ears too.

Ah.

I reflect that it can sound abrasive (but only if you let it).

THAT IS THE SOUND OF STIGMA. And this is why it matters, and why we need to own it.

We have to get over the stigma to move beyond it. If enough of us use and reclaim the word we can make the kind of hard won advances we’ve witnessed for LGBTQ+ communities.

This is why we push the point and wear identity first as a badge of pride.

I’m not surprised that I’ve come to love the word autistic. No. But I can still (just about) retrace my journey.

Something happened to me as I grew closer to my community – as I grew into my autism – I found I no longer understood the person first position. I’m simply an autistic person at core. No add on autism, just autistic.

I’ve come so far in my travels that not using identity first language now seems the abrasive option. The with autism thing has become impossibly silly to my ears. As in, I think I’ll  nip into town with my autism (hope I don’t lose it like those gloves I lost last week!) Foolish I know…

But that’s the trouble. Significant interest groups still experience the word autistic as too harsh and problematic.

I’m trying hard to understand all this as April approaches. I need to see a way through it. What I’d most like is progress through decent conversation. Don’t we need deep engagement with these ideas rather than huffy stand offs?

So as April comes around again I’ll get into brace position for #AutismAwareness, which in my experience is a month long assault course of mainly person first campaigning. Autistic voices work hard to insert their narratives – I’ve often joined in but this year I have no heart for it.

I want no part of this as an endless argument culminating in a mute or block on social media. It’s just too depressing.

So this April will be about the positive small changes close to home rather than the big picture out there. I’ve come an awfully long way but must own that it’s taken a very long time to get here. If I can make just one person stop and think this month it will be good enough for me.

Did you just call me badass? Autism and identity – a list in progress.

March 17, 2017 § 13 Comments

Photo on 02-03-2017 at 15.35 #2I’m grabbing at thin air. My words plucked from a cloud in which a soup of experiences swill.

It’s true of all my writing that until start to pin my words to the page it’s as good as alphabet soup. Such is the autistic mind (in my case).

Contentious terminology was the subject of my last piece called When only autism will do, for which my favourite comment was a thank you for my badassery! This pleased me more than I can say.

So I’m back again at the coalface – or the cola face (as I just typed before correcting myself). Oh how I would like to be at the cola face right now – with my face in a cola. But I digress.

What I’m grappling with is self-definition but it’s all a bit drifty and hazy (the shifting sands of autism, to switch the metaphor).

But anyway – here I go (and the usual rule applies that I speak for myself).

I’m at an early stage of a late-life diagnosis which probably makes a quite a difference in terms of perspective. If I fall down in what I’m trying to say, I hope my kind readers will help pick me up, rather than throw rotting fruit. Which is kind of where I’m going with this.

So.

Yesterday I bought chips from the chip shop round the corner from my studios. Kaz, the charming chip shop owner (and as it happens extremely talented photographer) was feeling it. It being the weight of world events. He sprinkled some wisdom along with the salt and vinegar. I’m  getting old, he said (we’re roughly the same age). I’ve been mistaken all my life – and I’m praying for us to save ourselves from ourselves (referring again to global matters). I nodded, and left with a warm feeling (emanating from the chips probably) and the final golden nugget; the only thing that truly matters and can save us is love.

And swoosh! Into the sunlit street I bounced, past traffic and trees heavy with pink blossom, clutching the warm package of potato love!

I assume Kaz means self-love is important too. I hope so because I reckon it is.

But it is love in a wider sense (this is old fashioned I know) which I’m finding so missing lately. It’s been replaced by the kind of static you get from a nylon nightie pulled roughly over your head.  Shocking and hateful – or rather hate filled human expressions are what we find reflected in so many media outlets that there are days when you don’t know where to look. Not enough love it seems.

Amidst all this static I find myself with a daunting task – staying afloat and making sense of it all as a newbie autistic. I’d really like to find some clarity about who I am post diagnosis (haha! even my diagnosis of  Asperger Syndrome is contentious).

So I’m making a list I can hold onto, and if it helps anyone else in my situation I’m more than happy to share.

  1. I identify as autistic rather than Asperger’s.
  2.  Question: can I be seen, heard, understood and respected as an autistic person by others?
  3. Insight: 2 seems tricky especially as I don’t fully understand me myself yet.
  4.  Identity appears to shift in varying and wider contexts than my own four walls.
  5. The necessity of passing seems to affect 4.
  6. Neurodivergent (ND) as a term has both advantages and disadvantages.
  7. I’ve decided I like the bluntness of the word autistic better. I like the clarity and ‘shock’ value it brings. I vehemently dislike aspie and autie.
  8. I can be badass.
  9. BUT please –  if I forget my manners give me a nudge!
  10. Note to self. A bag of chips is only ever two blocks away.
  11. Further note to self. Try not to drown in world events.
  12. Because even numbers feel right.

 

 

When only autism will do.

March 10, 2017 § 25 Comments

IMG_1006

Yes, yes, yes…okay, okay. Alright. I boil washed another jumper! It’s becoming a thing – a metaphorical thing. 

This post is about access and exclusion. 

It’s about a stripy jumper made out of scratchy wool that doesn’t fit. Like that awful Xmas gift (that keeps on itching) – you really don’t want it but you have to say thank you.

And if you say thank you very much for all your kindness  but…(insert any variant on a polite – er…it doesn’t quite fit me) be prepared for trouble and even abuse.

This matters because we’re not really talking Christmas gifts where there is less at stake in keeping schtum. Access is about basic equality, and yet ‘social tangle alert!’ It seems we must be grateful and find ways of asserting ourselves which do not upset anybody  – unless you fancy a nice slap down that is.

Yes. It is ‘socially’ problematic for autistics to talk about access for many reasons, many of which flow from the fact that we are rarely in a position to lead the conversation.

Firstly we have an issue of system bias (viewing autistics from an non-autistic perspectives which can be erroneous and unhelpful), but also logic is not as strong a suit for non-autistics (diagnostically so).

What seems to matter more at times (judging from a recent negative experience) is that we are seen to be gratefully acquiescent and value effort above possible fit, and therefore not mention our inconvenient discomforts. And here we hit another potential rock. If non-autistics are highly invested in the process (as they must be often to continue with their work) they may feel that they have become ‘expert’, acquiring all manner of specialist knowledge – and they may also passionately believe that they know autism inside and out (and in their own ways they do). I don’t doubt that this can be genuine and I am indeed grateful for their interest and commitment.

Increasingly, (as awareness grows) non-autistics do now in some ways consult autistics about their access needs – and are seriously intent on advocating from primary sources. Okay – so what can go wrong?

It is both complex and simple. Two things; there are many autisms and autism (I’m very much afraid) can only be experienced from within. I can explain my autism to you, and you will understand it from your own neurological perspective. I wish this were otherwise but no.

SO even if the research is done – the resulting material still comes together from a non-autistic perspective and will be presented thus. This is the work of cultural interpretation and translation, subject to the usual problematics of error and potential tone deafness to the language of some autistic native speakers.

This could be justifiable at one time before the advent of the adult autistic self-advocacy movement, which daily gathers strength as a driver for social justice. But it no longer is in my view. Autistics can’t as a group be spoken for ‘because no one else will’. We are here literally crawling out of the woodwork of late diagnosis and we have some serious skills to share.

So when an ally does great ground work and volunteers their time – and even their soul time my appreciation is genuine. But don’t just consult us – let us ‘speak’ (in which ever modality that expression occurs). I say this because ‘speaking’ is not about talking always. And if we challenge you – please listen. Don’t swipe us down. We’ve taken a long time to open up and speaking out can be a huge deal despite appearances.

This week I have been subject to the accusation of condescension. My polite ask for high functioning and low functioning labels not to be used rejected. When I’ve said that autistics I know would prefer to speak for themselves I am told that this is all well and good but that many can’t ‘speak’, and therefore it is up to non-autistics to speak for them.

I had stumbled on perhaps the greatest chasm in the autism world at present – parents of autistics vs adult autistics. Hence perhaps the bitter bile that rose to the throat. I truly wish it didn’t have to be like this. How can we have a decent conversation if dissent leads so readily to insult.

I am a parent too. But I will (by some) of course be accused of having a child too high functioning to count. I am myself too high functioning to count perhaps? But think about who loses.

I refuse such demeaning terms. I refuse high functioning as much as low functioning – it’s opposite number. Low functioning is not a term to describe any person, child or adult in my view. I don’t even want to go there. Would you like it? I don’t go around calling my non-autistic friends high or low functioning normals. See what I mean?

My view is that autistics are complex beings like any other group. As a group our needs vary greatly but we share this characteristic with the rest of humanity. Dignity on all levels flows from supportive language from which to forge identity and define ourselves – this is a universal human need, I would argue. So I suggest that low functioning is a crap thing to hear about yourself, and I say so knowing how painful it was to have my cognitive profile outlined in terms of ‘deficits’ – and that part of my healing from this experience has been to reframe the language I use about myself.

My recent experience (provoked by an unwillingness to just pipe down) signals an increasing frustration with a silencing by other voices in my community. I am accused of thinking I ‘own’ this debate. No doubt I would also be accused of tone deafness to parent’s needs and those of autistics with support needs I don’t share. I don’t think my stance implies either – this isn’t a zero sum game. Adult autistic contributions benefit everyone.

And we as a group (and I as an individual) do want to lead, shape and inform society in it’s betterment of autistic lives. It is said by many and it is said increasingly often. Listen to autistic adults – we can help improve your child’s future world now, whatever their needs may be.

Where Am I?

You are currently viewing the archives for March, 2017 at The other side.

%d bloggers like this: