Living life Outside The Box

What does living outside the box mean? And why is it relevant to autistic and ADHD people? The name of this blog and website explained

Some time ago I was invited to do a talk about what it’s like to be diagnosed autistic and ADHD later in life. As part of the presentation, I created a stick-figure image of myself leaping out of a box and titled the slide Being real. To me it represented release from a lifetime of enforced normalisation – captivity, of a kind – free at last and empowered to be who I really am, my true authentic self. (OK, it wasn’t actually that straightforward and certainly not that simple, but that’s a story for another day.)

The point here is that I felt like I had been in a box, figuratively speaking, for all of my life. And it’s that box, not fictional stick-figure thin me, that is the vitally important element in this image.

That box represents the norm; the standard, the convention; prescribed societal protocols, cultural constructs and rules of conduct; all the demands and expectations of society by which we are all measured and judged.

The Box (yes, worthy of capitalisation now) is the society that has been set up to suit the majority of people living within it. To most people The Box feels comfortable, familiar and accommodating; it is set up to meet their needs and to serve their purpose. They probably don’t feel like it’s a box or a container at all, or feel overly constrained or restricted by it to the point that it causes them confusion, uncertainty, anxiety, distress and trauma – but that’s because most people aren’t autistic or ADHD or otherwise neurodivergent.

This Box is a Box for the neuromajority. It claims to be big enough to include everyone and all neurotypes, including neurodivergent brains that think, process, learn or behave in qualitatively different ways to most others; but it is not. Not yet.

This Box is not the right shape for autistic and ADHD people, and it’s far too rigid and inflexible even in current times to adapt to truly accommodate their unique forms and their natural, authentic idiosyncrasies. Yes, The Box has improved since explorations of autism and ADHD began more than 100 years ago, but it’s still very much less than ideal. The Box is still very aware of difference, and there remains a palpable sense that difference sets an individual apart from others. And not in a positive way.

And so we come to marginalisation. And stigmatisation. A neurodivergent person is perceived as being ‘out of sync’ or ‘not quite right’; they’re always a little bit (or a lot!) ‘wrong’ or ‘inappropriate’. An autistic person is anti-social according to the rules of The Box; an ADHDer is always in the wrong place at the wrong time, doing the wrong thing in the wrong way, and essentially displeasing others. Sensory profiles are ‘too much’ or ‘too little’, but never quite right for The Box. Communication, interaction and behaviour don’t meet Box standards or requirements.

The Box insists on conformity, however. It insists that the failings of difference must be overcome and that autistic or ADHD people must learn how to get on in 'the real world’. ‘Yes yes, it’s OK to be autistic/ADHD, but can you just not do that thing right now because The Box needs to pursue its neuromajority-serving agenda and you’re messing things up.’ Nowhere is that mandate to conform and toe the line, and ‘behave’, more evident than in our education system.

The outcome is enforced normalisation and pressure to assimilate into The Box. But being forced to morph and change your shape and your entire entity to fit The Box, to suppress all that is natural, authentic and unique about you, is extremely painful. Think of the square peg being rammed into a round hole – crushing the peg’s corners to make it fit in is gonna hurt a lot.

The Double Empathy Problem is manifest. The necessary two-way street of reciprocity and mutual understanding collapses into a pile-up at one end – or rather a pile-on, since responsibility to fix the problem is laid firmly at neurodivergent feet. And we autistic, ADHD individuals are brainwashed into believing the narrative that we are impaired or deficient; the diagnostic process with its heavily medicalised and stigmatising language reinforces it; and all too frequently we end up in a downward spiral of self-stigmatisation and perpetuated self-negativity.

I have lived in that Box all my life, figuratively speaking. Saying that I was able to leap from The Box and finally be authentically true to myself on identification that I’m autistic and ADHD is a little facetious. If anything, I spent a long time after my identification just lifting the lid of The Box a tiny bit and peering out very cautiously. Which is why I’ve chosen to use a picture of my cat Spooky, sitting in a box and looking somewhat contemplatively at The Outside, rather than stick-figure me looking so joyous and enthusiastic.

It’s still a bit daunting out there. There are always those who come along and want to pop the lid back on or tell me to get back inside. Even the act of writing this blog evokes anxiety about what others will think, what criticism they will levy or what negativity will come my way. And then I pause and feel like hiding or holding back, like my other cat Rocket, pictured here peering out from the safety of her hidey-hole. And it takes courage to keep going and venture out and explore The Outside.

Nonetheless, understanding my autism and ADHD has helped me to learn about myself and to trust what I know about myself, rather than cede to others’ notions of who I am and how I should be. Self-knowledge is an incredibly powerful thing. It allows opportunity for me to consider who I am and who I want to be, to be authentic and true to myself. It promotes good mental health and, above all, it’s liberating.

I’m not proposing a revolution, I’m not suggesting burning The Box or ripping it apart or a coup of any kind; I’m merely acknowledging that there is life outside The Box, and that it is often a very necessary place for neurodivergent people to be to ensure that those square peg corners don’t get crushed.

More than that – Outside The Box is a positive place, where autistic and ADHD individuals can thrive and flourish, and authenticity can be encouraged and celebrated. The Box is still there, and that’s OK; there’s free movement across the borders and, in fact, reciprocity between the two is welcomed and actively encouraged.

My hope is that, eventually, we won’t need to think about being either inside or outside The Box, and that no one’s corners will be crushed wherever they are. When that happens, the name of my enterprise will, happily, become redundant.

Until that time, my aim is to promote positive life outcomes for autistic, ADHD and all otherwise neurodivergent people, and to enable them to enjoy living life Outside The Box.