Autistic Communication: We’ll Paint By Numbers ’til Something Sticks7 min read

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™ 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.

4 Comments

  1. Thank you for this great post! My autistic son has apraxia and also needs more time to process lan­guage, but is very capable of expressing him­self (and pro­cessing lan­guage) in writing. It took us a while to figure out but now he can use tools to express him­self when we can’t under­stand what he is trying to ver­balize.
    I really appre­ci­ated this post and it made a lot of sense. Thank you again!

  2. If they could under­stand that the dif­fer­ence between how a neu­rotyp­ical and neu­ro­di­verse brain oper­ates is like the dif­fer­ence in the oper­ating sys­tems between a com­puter run­ning the Windows oper­ating system and the Apple/Mac oper­ating system.…. If you buy a pro­gram out of the box for one it won’t run on the other, it needs to be “trans­lated”

    That’s what autistic people have to do — trans­late allistic com­mu­ni­ca­tion. We com­mu­ni­cate fine in our own oper­ating system.

    1. I feel it all the time. I feel I’m a Linux talking to Windows, trying to make pro­grams work under strange, obtru­sive norms to make them under­stand the use­ful­ness of free soft­ware, while they try to impose appli­ca­tions made by cor­po­ra­tions with vested inter­ests.
      But some of them are run­ning that free soft­ware proudly now. The cor­po­ra­tions obvi­ously don’t like it but they cannot do much more without breaking long-believed-in morals and making average people angrier to the point of boy­cott.

      In fact, the struggle of free soft­ware resem­bles the strug­gles of many groups against the System: LGBTQ+ people, poor people, salarymen abused by their bosses or dere­gle­men­ta­tion… It’s because the System, con­trolled by hyper­so­cial solip­sistic psy­chopaths, is based about making cer­tain “majori­ties” of people happy, as in making the “least dif­ferent” happy, meaning excluding all people tagged as dif­ferent, because dif­ferent people do not “come right” in the world­view of the world’s con­trollers, they rep­re­sent alterity, the truth that they try to deny as they are deluded by power and addicted to the feeling of con­trol.

      We neu­ro­di­ver­gents need to be the spear­head of this great “Struggle for Alterity”, as we have serious moral high ground because we are dis­abled and cannot be ever relieved of that clas­si­fi­ca­tion at all, and we have no inner “wrong­ness” or “per­ver­sion” to be ashamed of that would be under our con­trol (as is, we didn’t choose this life, and it’s life itself that chose it so nothing is wrong about it).

Talk to us... what are you thinking?