Autism is Family: A Guest Post by Sonia Boué

I began to write this blog early this morning; by the afternoon it appeared that I might be psychic. One Dr Manuel Casanova, neurologist and US university professor had taken to cyberspace with some pretty toxic yet surprisingly disjointed views on what he considered to be the blight of the neurodiversity movement [[you can read the post here, but Trigger Warning for its ableist language]. It’s distressing, but the only thing to do is blog back with a firm rejoinder on the joys and benefits of neurological variation and the importance of what autistic adult self-advocates do best – giving a window into an important cultural and perceptual difference within the human population.

One of the most striking features I’ve found amongst this marvellous online community of adult bloggers is the urgent desire to communicate about what autism can be. It’s a top class ‘world service’ in my view, which reaches out to it’s own as a support network but also seeks to educate what has come to be called the neurotypical (NT) world – if only it had better ears and eyes sometimes. Blogging has emerged, particularly strongly in the US, and partly in response to heinous misrepresentations of autism by the major US ‘charitable’ player for autism, Autism Speaks (A$), whose negative rhetoric includes a recent comparison of autism with leprosy. Nice!

It is also fostered by a pressing need for understanding in general, and the right sort of compassion, which isn’t steeped in ignorance or pity-based, but works rather on the basis of equality through a respect for neurological difference.  What autism means can be different in each case – although there are common threads – and so I’ve found it’s helpful to engage in total blog immersion, and allow the myriad perspectives to filter through over time. It’s been almost four years since I began this process, spurred by the need to understand family.

So what have I learned?  Well, it’s been quite a revolution because I began at the wrong end of the stick. Through a systematic barrage of misinformation largely filtered through medical models of autism, I truly thought it was a baffling condition visited on the family through a combination of ‘bad’ genes and ‘bad’ luck. It shames me to say that I really did think my job was to help ‘afflicted’ family become as ‘normal’ as possible and ‘fit in’; a task I was mercifully unqualified for, being far from ‘normal’ myself. Menaced by the mantra of ‘early intervention’ and the language of ‘rescue’ versus ‘regression’ we agonised over, but happy failed to implement, a bewildering array of possible ‘cures’. The point is that autism was a negative in our lives and much grief spent over a losing battle to conform. I’m still so very angry about this hi-jacking of a relationship over many formative years in which autism felt like a chasm I could never bridge.

What I’ve learned from all these luminous (and freely given) blog gems, is that autism is so very human. Of course it is, it always was. Autism is not ‘other’, and autism is not what most people think it is. For me, autism is family, and my autistic friends have shown me that autism could perhaps be me. Wired differently too, I share many autistic traits but don’t struggle with social pragmatics. For me (forgive me if your view differs) the inability to process social pragmatics ultimately forms the outstanding feature of my loved one’s particular diagnosis. This specific learning disability (SpLD – current terminology in UK ) feels entirely parallel but rests in a different area of cognitive function from my own neurological disability, in which number, system and pattern don’t register. Both have sensory processing and co-ordination issues at core, and so I use my own neurological difference to create a force field of empathy and many compass points of comparison with my autistic family. It’s a privilege to be so close to autism, and to move between neurologies revelling in the beauty of difference. In sharing so much, my blogging friends have not only helped me understand my loved one, but also to understand myself; a fellow ‘square peg’ as one friend in particular puts it.

None of this detracts from the true challenges within autism and disability (using a social model) in the present. Also there are many co-existing conditions such as epilepsy, which create suffering for autistic people, but self-advocates point out that they don’t suffer from autism itself – this is an important point never taken up by the likes of Dr Casanova and A$. They seem to miss that a cultural definition of autism – albeit with a neurological basis – is being employed; autism here is identity and community. Autism is family. From this perspective, A$ and the rhetoric of ‘cure’ is entirely oppressive. Family is family and spectrum is spectrum. Dr Casanova’s fantasy of an elite intent on superiority is based on poor homework. Read the blogs Dr C.

What’s needed is a focus on the benefits of difference, and a true assimilation of the way in which assumptions about the superiority of neurological ‘normalcy’ (if it truly exists) limit us all. The good doctor holds disappointing views for a neurologist, which is too bad as he has the power to influence opinion.  It’s vital, in my view, to follow the lead of autistic self-advocates in insisting on detail and diversity within the autistic spectrum and avoid too much generalisation, which leads to sloppy assumptions and unfortunate stereotyping. Keeping to the particular safeguards against such unhelpful tendencies, and was one of the original reasons for beginning a blog post today, to share something I found significant, and to contribute; to give back. Because that, Dr Casanova, is what we do. And the following breakthrough moment, has nothing to do with cure, but everything to do with enabling, and empowerment. It’s also about ‘rescue’ in the form of paying to attention to detail and asking the right questions. No relationship to rescue in bio-medical terms.

For some time now my family member has wanted more social contact. But the question has been how to break into the bewildering social whirl outside the school gates? It requires complex pragmatics to navigate the volume and speed of NT communication and find out what the options for joining in might be. This is hefty processing. So imagine, in addition, the confusion arising from ‘hidden assumption’. In this case that everyone knows how NTs gather the relevant social information. You see Dr Casanova, autism can mean not knowing that NTs use questions to achieve connection. Autism can mean not knowing that NTs use them like phone book or a tv listing – just to find stuff out. And autism can mean you experience questions as something quite different. In this case as statements of intent.

I found out about this exact difference of perception only through a very recent social mishap. New Year’s Eve saw another occasion of failed expectation and social imprecision. I’ve spent such a very long time misunderstanding the refusal to use questions to make more effective social arrangements – not even by SMS. I thought processing issues might be at the heart of things every time the grind of mashed gears and a blank expression told me my words weren’t working. I knew to back off. Oh, I get it now, but only because I finally asked the right questions never imaging where they might lead us. That’s how hard it can be, Dr Casanova,  it can take years of mashed gears even with people who have love and patience in their hearts. But at last I know that asking a simple question feels as dangerous as peeling off your skin and showing everyone your acute need for companionship and belonging; how risky and exposing, especially if you don’t have a secure friendship with the other person to fall back on. It’s just what a young person needs when exposure anxiety is also in the picture. No wonder fear has always won out and caused such a roadblock.

At the moment of realisation all the years of thinking helpful hints just couldn’t be processed, flashed before me. I saw the tension leave my loved one’s body. How liberating it must be to begin to understand that simple questions don’t necessarily expose you to others. What fathomless depths to be managed every day when you don’t have a social compass. No-one should ever wonder why fear is so present in autism, nor diminish it. Spectrum is spectrum.

So we need to counter the ignorance of those like Dr Casanova who should know better and care more about detail. I’ve yet to read a blog claiming that autistics are superior to NTs (but I see the inverse implied every day and everywhere). Respect and equality will do. Thank you.

Sonia Boué is a visual artist based in the UK. Using discarded objects and materials, she fashions new narratives referencing domestic interiors and childhood games. Her work is research based weaving together history and autobiography. Barcelona in Bag is a current and ongoing project about exile following the Spanish Civil War. It is in development as an online museum.

“I am more interested in building a community of friends around a piece of work than numbers.”

Sonia has created and currently hosts The Museum for Object Research at http://www.a-n.co.uk