Humans communicate in many non-verbal ways. An eye-roll in a supermarket queue, slamming pots and pans around because you’ve been left to wash the dishes again– people throw these missives around like confetti, and a great many expect to be understood, at least in terms of the emotion they should convey.

How?

Conditioning. Context. Societal norms. The luxuries of majority, of shared experience, of accepted and recognised reactions, learned as children and practiced unconsciously. A great many adults will recognise that when a child is acting out of character, particularly in ways perceived as negative, there is a deeper issue to be unraveled which the child may not be capable of communicating verbally.

Crucially, they see when the child is not okay because the non-verbal ways in which this is communicated (tiredness, acting up, sullenness, distress) are understood and picked-up on. These behavioural methods of communication are ingrained and accepted as that: communication.

Some of this is learned behaviour – parenting is a lucrative subject for publishing houses – but much of it is understood due to lived experience, namely that adults were once children, faced similar situations, reacted in similar ways.

But what happens if the child is not of the majority? If the child is, say, autistic and perceived as non-communicative because their sounds are not heard or their gestures misunderstood?

This is not a failure to communicate

We do not say that the communication of a baby is faulty because it is difficult for adults to interpret– to the contrary, we recognise the steep learning curve experienced by new parents and much literature exists to support this. The baby communicates a need via the medium of song, (note: appreciation of this sound as a musical form does vary) and the onus is firmly on the caregiver to figure out what is required.

And when both baby & caregiver are tuned to the same frequency, the sound is received as a message, rewarded, (hopefully with the desired attention) and the need is met. When caregiver is neurotypical and baby is, too, they muddle along fairly well together; after all, society embeds this information for its’ own survival.

We learn throughout our lives and via varying media that babies cry for particular reasons and thus the message, although often not containing sufficient information when baby is tiny, is received and understood. However, if the caregiver is unfamiliar with this and fails to respond appropriately despite the baby communicating to the best of their ability, is the baby wrong? Is the baby ‘broken’?

No. And neither are autistic kids.

We’ll paint by numbers ’til something sticks

Non-verbal autistic kids are communicating. Some could be considered more fortunate than others because their method gels with that of their caregiver and the message is at least recognised as such. When an attempt at communication is misconstrued by the adult, some real issues can arise. Issues such as caregivers who claim that their autistic child simply doesn’t communicate. But is that really true?

I believe that a significant number of autistic children are unlucky enough to be in the care of adults who fail or refuse to recognise the methods by which they are attempting to communicate, because these methods differ from the neurotypical norm.

These methods require effort and diligence on the part of the adult to interpret, just as effort and diligence is expended in building communication with any child and, as with any child, the responsibility for ensuring that a child is heard remains firmly with the adult.

I also believe that the #ActuallyAutistic community as a whole is being ignored and reviled in their attempts to bridge the gap between autistic children and the neurotypical kin into which they are often born.

Because yes, #ActuallyAutistic adults do exist

We are not a fairytale, nor are we all socially clueless savants wandering the world in search of a Netflix Original Series. We exist because we were able to survive childhoods which, for many of us, consisted of misunderstanding, trauma, and victimisation, so we see and understand the challenges of these kids, and it’s not just that they are part of our community.

In so many ways, they are us. Most of us seem to carry scars from childhood, from the difficulties we experienced as autistics attempting to thrive/survive/hide in a world where our differences were not only clear but often made us a target.

Many of us struggle daily with reminders of those times. For me personally, childhood was a confusing and scary experience which I only began to understand some twenty years later, through the lens of autism. When we see autistic kids, we see us. We see ourselves and our attempts to fit in to the world around us.

So it’s doubly jarring to see these kids treated as less-than others, as web content for the benefit of their parents’ egos or wallets. It hurts the kids we were and the adults we’ve become.

And I hope you can understand why it angers more than a few of us.

#ActuallyAutistic adults are disenfranchised; we have not yet achieved a level of ownership of our stories, of our communities in the way other minorities are starting to achieve. Simply put, ours are not the loudest voices of autism and we are consistently drowned out by parents of autistics laying claim to the condition and to the horror they insist it brings.

We are told that we are not authentic; that we don’t understand; that autism is not about us, because our experience is not their experience. This latter at least is true, because the parents exposing their children physically and emotionally on the internet are not autistic, not connected to us, and our communities are better for it.

But until those children are given a platform on which to express themselves, we are the closest you have, and you should be aware that many of us can speak via the written word in a way that eludes us otherwise. So yes, many of us were those children.

#ActuallyAutistic communities exist and we want you to talk to us. And given that’s not the default position for many of us, please believe that we see this as an incredibly serious issue. We remember being voiceless, both metaphorically and literally and we want to help.

Let us facilitate where we can, for we are the experts. Listen to our voices: where, when & how do we choose– and equally, choose not– to express them? Who do we support? What are the prevailing dialogues? Which issues/therapies/organisations elicit concern?

We. Are. The. Experts.

Not the guy whose book you bought because you saw him on TV and OMG he really got my struggle dealing with autistic people, you know?

Not The Autism Parent(TM) who chooses to record their child’s most vulnerable moments as evidence of their own suffering, or clickbait to monetise their web page.

Not even the doctors, if what you’re looking for is actual lived autistic experience which may equip you with the tools to improve whatever situation compelled you to seek advice.

Not The Big Bang Theory/The Good Doctor/Numbers/any other TV show with savant characters.

Choosing diversity, supporting diversity, defending, promoting and protecting diversity— where it happens– is one of the great human strengths, and most admirable.

You know, now that the options have widened so considerably we are pretty damn good at this communications malarkey. If you listen.

Please listen. Because few do.

Understand that autism is not an adversary to any of us but that instead each of us as a being is whole and indivisible from our neurology, be that autistic or allistic, neurodiverse or neurotypical: these are simply different ways of being, different operating systems and that each of these has equal potential to be positive and successful if a neutral or supportive environment exists in which we can thrive. Because truly, there is equal potential for development to be negative and repressed should the environment not encourage growth or confidence.

Neurology should not be seen as something from which to seek rescue, and where lack of understanding inhibits growth, we should always seek to gain that understanding from the relevant community if and when they offer this help.

Let #ActualAutistics interpret from their own lived experience where they are willing to do so, and let’s redress the balance in the conversation of what it means to be autistic, what is needed, what is being communicated and how– and then let’s add this to the childcare books, the accepted wisdom on child rearing, the knowledge passed down through generations on raising strong, accepted, supported children of any neurology.

And most of all, let’s see ‘the fight against autism’ for what it really is: a push to monetise, shame and abuse our vulnerable ones in a way that instead shames us as a society.