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

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.

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