Sending out an SOS with a Sprinkle of Seasonal Wishes

 Trigger Warning:

An analogy of the UK's national mental health crisis & 

consequences of unmet mental health needs.

Ends with options for seeking urgent help.

Image by Katrin Korfmann via Pinterest

As an “inclusive & tolerant” society,

we were appalled recently by scenes of officials seemingly standing by as desperate children & adults risked, & ultimately lost, their precious lives boarding an insubstantial boat, heading into treacherous seas seeking safety.

 

Yet we remain indifferent, maybe ambivalent,

to a similar scenario in our own mental health system.

 

Too many children & adults, struggling to fit in 

& excluded from their “inclusive & tolerant” society, find themselves fighting for their precious lives, metaphorically flailing in treacherous seas seeking safety.   

  

Rescue boats advertise their presence, 

& caring practitioners point the way, but the life lines are overloaded & seemingly inaccessible for many.  

 

Some officials glance, then sail superiorly by, 

muttering things like “you’ll grow out of it” or “get a job” or “in my opinion the risk of you actually drowning is low so it’s not worth me acting”.

 

Some officials stop to reprimand those seeking safety, pointing out the seriously ill people on land needing their help, or limiting their help to those already below the surface.

 

Other officials say there’s no space on the boats 

& the struggling children & adults must wait in the treacherous seas until space becomes available, which will be years, throwing in a selection of bouyancy aids to try meanwhile.

 

Then boats appear on the horizon promising space 

but, having been “too well” for earlier boats, you’re now deemed “too unwell” for these boats, or you’re denied access because you’re waiting in line for other distant boats.

 

Some tell of remote rocks you may rest on 

but only at certain times of the day, so time your desperation accordingly.

 

Some offer boats in glass bottles, 

for those with the means of breaking through glass.

 

 And for those with autistic sick brains 

the obstacles to safety swell.  

 

Then, some officials say they can’t help 

because they’ve only been trained to save people with non-autistic sick brains.

 

Other officials might tell you not to even try 

getting on their boats because they’re not suitable for people with autistic brains, failing to notice, in that moment, any boat is better than no boat & failing to acknowledge that people with autistic brains have likely been in the water much, much longer (their flailing in treacherous seas normalised) & autistic brains are much, much more likely to succumb to it’s depths*. 

 

The trauma of flailing in treacherous seas, 

unaided for so long, numbs the autistic brain & silences autistic screams; & these desperate souls are passed by for those whose needs are deemed greater because they can still scream.

 

It’s as if autistic souls were given life vests 

but without a whistle for drawing attention.

Without a whistle, & with screaming silenced 

by catatonia misinterpreted as a state of relative calm by officials, we flail, unheard & untreated, drowning unseen*.

 

To those in boats (those boats we're all supposed to be in, even if we're in different boats) I say:

 

 Look again at the choppy waters around the boats 

(those on bigger boats, further from the sea’s surface, may need to look harder): what looks like breaking waves may actually be the desperate waves of struggling, broken children & adults seeking safety whilst officials stand by.

 

Appalled?

 

This advent, these are my seasonal wishes:

 

To see free ships come sailing in, 

on Christmas Day, on Christmas Day, 

To see free ships come sailing in,

breaking through the dark.

 

To see free ships come sailing in, 

And all the bells on earth to ring,

And all the angels in heaven to sing, 

On Christmas Day, on Christmas Day.

 

I wish for sufficient & suitable spaces 

on substantial boats for desperate souls when travel across treacherous seas is unavoidable to be safe;

 

I wish officials on shore would intervene earlier 

to help the struggling children & adults feel safe on land, minimising displacement & reducing the volume of desperate souls in treacherous seas.

 

I wish society would flex & evolve 

to better include struggling children & adults so they feel safe where they are, anchored to solid ground, thriving autonomously, Captains of their own ships, officials standing by & saluting rightfully.

 

I wish. I wish. I wish.

 

Save Our (Desperate) Souls

 

~o0o~

 

* Autistic adults who do not have a learning disability are 9 times more likely to die from suicide; autistic children are 28 times more likely to think about or attempt suicide (source autistica.org).

 

~o0o~ 

An Aside: 

 

For as long as I can remember, 

even in calm waters or back on land, 

I’ve always feared death by drowning.  I heard it said once that the way you most fear dying is the way you will die.  I’ve no idea how true this is, nor have I dwelt overly on such a harbinger of gloom, but recently I'm forced to acknowledge I often feel I'm drowning metaphorically, if not literally.  Although, I don't intend to!

Image by Sarah Lee on flickr via Pinterest

~o0o~

 

Unconvinced of the crisis?  

Watch “Dr Alex: Our Young Mental Health Crisis” filmed for BBC Children in Need 2021

 

Struggling yourself?  

If you need help now there are options (for full list of options offering immediate help in the UK visit NHS.uk): 

 

"To talk, any time of day or night, free listening services offer confidential support from trained volunteers. You can talk about anything that's troubling you, no matter how difficult:

Call 116 123 to talk to Samaritans, 

or email jo@samaritans.org for a reply within 24 hours

Text "SHOUT" to 85258 to contact the Shout Crisis Text Line, 

or text "YM" if you're under 19

 

If you're under 19, you can also call 0800 1111 to talk to Childline. The number will not appear on a phone bill."

 

Reach out - you are not alone x

Image via ZsaZsaBellagio.tumblr.com on Pinterest

Origin Unknown

 

 

Aye to Aye Contact

This started off as a 

“short story” with the working (never to be final) title 

“Forcing Autistics to Make Eye Contact: Help or Hindrance? 

I was set on producing an adapted-for-non-autistics, straight to the point, communication.

Image via Pinterest & The Infinite Abyss 

Inevitably, it’s ended up as a “long story” 

with the full autistic communication experience because, in the end, the tangents & fuller picture are as important to me as the original short story (& I’ve already invested much too much time in multiple edits to get to this point).

For even longer

I’ve been pondering the persistence of 

a general misunderstanding of what it is to be autistic.  

How society continues to misinterpret & vilify autism & mostly miss what are innate autistic strengths.  It’s frustrating, scary & forces many autistics to remain “in the closet” about or, worse, unaware of their true identity & authentic autistic self.

 

Anyone can look up autism diagnostic criteria but it does tend to be deficit focussed.  Whilst we shouldn't underestimate the "deficits (or ignore the "difficulties"), for simplicity's sake I say:

 

Autistics communicate differently.  

Image via The Chromologist on Pinterest

I’m convinced that the key to mutual understanding between autistics & non-autistics lies in a mutual appreciation, acceptance & accommodation of each others’ communication differences.

 

I choose to identify as 

a Native Autistic, Talking Autistic, first language Autistic. 

If others can think of me as such 

then I believe we establish a stronger foundation 

from which to forge that mutual understanding.  

And by language & talking I don’t necessarily mean speaking.

Image by Carolyn Quartermaine via Instagram 

Unconvinced? 

Well, let’s investigate this 

by looking at one facet of autistic communication that contravenes non-autistic communication convention:

 

(Eye to) Eye contact, or lack of.

Image from ZsaZsaBellagio.tumblr.com via Pinterest

Let’s start by considering a scenario 

with a deaf person who relies on an interpreter 

to translate the spoken word into sign language:

• What would you think if the person “speaking” became offended by a deaf person not looking at them because they were focussed on their interpreter in order to “hear” & understand?  

• What would you think if the person “speaking” forced a deaf person to look at them whilst they were speaking?  Who benefits?    

• How do you think a deaf person would feel if forced to look at the person “speaking” rather than their interpreter?  Misunderstood, disempowered, disabled, upset, frustrated, angry even?  Maybe excluded, victimised, bullied or abused?

All possible.

Next image irrelevant?  Keep reading ...

Image from christinawilson.wordpress.com via Pinterest

I'm enjoying watching Strictly this year, 

in particular the evolving relationship between 

Giovanni & Rose (who’s deaf).  It’s been a joy to see not only the successful & respectful inclusion & acknowledgement of Rose’s interpreters but also the efforts made by everyone to “talk” to Rose in a language she can more easily receive.  And it’s been a joy to see how Rose has been enabled & encouraged to explore other forms of communication that work for her, like learning the Foxtrot by “feel” through the movements of Giovanni’s body.

 

As a native Autistic (1st language Autistic remember) 

I relate to this strongly.  Notice how communication ... how “talking” ... is enabled by more than just speech, more than sign, but through touch, sight & so on?

Image via Annette de Vries on Pinterest

 

This is what it is to be autistic, with one big difference ... one big hindrance: others misunderstand & misinterpret a perceived “lack of eye contact” as rudeness or an unhelpful autistic trait, by which I mean unhelpful for the person “speaking” to an autistic.  

But avoiding eye contact is not unhelpful for us: 

Quite the opposite.

 

Image from Borboleta via Pinterest

Like Rose, looking away (or closing our eyes) can help us to better receive, interpret & understand speech.  Speech that is often delivered in a style different to our own natural style.

 

Not making eye contact helps us focus on the most important sensory input in that moment ~ maybe speech, maybe not.

 

Not making eye contact helps us filter out the unimportant & distracting sensory inputs many non-autistics are able to filter out intuitively including visual, auditory, physical & so on.

 

Not making eye contact helps avoid the physical pain some autistics feel when eye contact is forced.

Image via Pinterest 

Other traits discouraged in autistics for being socially inappropriate or different to “normal & accepted behaviour” are exaggerated gesturing & exaggerated facial expressions.  Again, these can be essential weapons in our armoury for receiving & delivering communication.

Image via Pinterest 

I vividly remember times when the spoken word would not come & I resorted to willing others to “hear” my thoughts through touch (another potential no-no), telepathy & the occasional fortuitous accompanying music track!  

Image via Pinterest

With all this in mind, 

imagine how autistic people feel when they’re forced to “look at” & “make eye contact with” a person who’s “speaking” to them?

 

Because that’s what’s happening to autistic people every day, in every town, directly & indirectly, in schools, at work, in social & even some health care situations.  And, generally, autistic people do not have an interpreter (to interpret the different ways of speaking non-autistics have to autistics) so autistics have to work extra hard to interpret for themselves, to understand before responding.  Generally, autistics (especially children, the undiagnosed or the unaware) don’t even know they’re trying to communicate in a language that isn’t actually their first language!

 

I do feel practices promoted as being “helpful” to autistics ~ in that they “help” autistics “speak” in a more non-autistic way so as to better “fit in” & be understood ~ can stifle rather than amplify autistic voices, disable rather than enable (more on this later). 

 

So, forcing (eye to) eye contact is a hindrance to autistics, not a help, in the same way removing Rose’s interpreters would be a hindrance to her.  Not forcing eye contact enables autistic people to better hear, interpret, understand & respond because “speaking” may not be an autistic person’s first ~ or native ~ language. 

 

As with Rose, I would like to see authentic autistic communication, in all its forms, respected & acknowledged with non-autistics making an effort to “talk” to autistics in autistic language ... for autistics to be enabled & encouraged to explore forms of communication that work for us ~ as a rule, not by exception.

Image via crashboomdesigns on Instagram via Pinterest

At the very least give autistics space to communicate in ways they choose.  Accept our idiosyncrasies & “mistakes” as you would accept those of others making the effort to speak in a non-native tongue or language.

Image via Pinterest

As an autistic who’s been unknowingly “speaking” in my second language for decades I may often appear fluent.  I’ve practiced, observed, rehearsed, adapted & learned from many mistakes.  I’ve obviously “managed” being autistic at work to a senior level but I worked hard to fit in & intuitively developed strategies to fulfil defined roles.  But I still stumble, especially without structure, preparation, clear “rules of engagement”, purpose or “permissions” or when tired, overwhelmed or in crisis.

 

What might helpful communication guidance look like? 

• learning each others' unwritten rules; 
• learning how to recognise the inauthentic; 
• learning how to recognise & set our own boundaries & how to assert ourselves when those boundaries are breached (as they often are, routinely, as the less well meaning take advantage of autistic vulnerabilities & positive autistic traits, to the extent that such abuse becomes normalised & difficult to recognise as “wrong”); 
• learning how not to absorb & internalise others’ bad behaviour to protect self-esteem; 
• learning what healthy relationships look like.  

Learning all of this indirectly, 

without feeling these lessons are aimed at addressing deficits.  

Bridge our differences, don’t dam(n) our differences! 

Image from The Bohemian Girl via Pinterest 

Interested in learning more? 

 

Read this excellently observed recent twitter thread by Katy Benson @KatyBenson20 on the commonly used in school SALT (Speech & Language Therapy) Talkabout programme (the trigger for me finally capturing my prolonged ponderings on autistic language & talking autistic).

 

This #autismrich family has contact with the Talkabout programme.  I hope it’s being used selectively, avoiding the elements highlighted by Katy which are extremely worrying & damaging to already fragile autistic self-esteem.  I hope the focus is restricted to the useful guidance on topics like being assertive, disagreeing respectively & what makes a good friend (because these skills are valuable to all).

 

For alternative thinking on how to approach SALT & set IEP targets with autistic children read this blog post shared by Emily Lees, an autistic Speech & Language Therapist, @EmilioLees on twitter.

 

For insight into autistic lived experience & the challenges of “speaking” when speech is not your 1st language read 

this twitter thread (& others) by AnnMemmott PGC @AnnMemmott

 

For a good read on the subject from an A list autistic, 

Temple Grandin, read any of her books, in particular 

“Thinking in Pictures”:

 

Thinking in Pictures by Temple Grandin

For a fascinating read on the commonalities

of autistic authoring (&, by default, autistic communication) read “Writers on the Spectrum” by Julie Brown. 

It investigates the writings of a number of autistic authors & highlights a set of common traits.  I recognise each & every one in myself, including the “messy” writing process, a rich use of symbolism, the repetition, randomness & rhythms of narrative & motivations for writing.

 

Writers on the Spectrum by Julie Brown

Finally, & by illustration (literally if preferred), 

read anything by Mel Baggs, a non-verbal autistic lady who found a voice through writing.  And what a voice.  The words I’ve read so far have resonated greatly with me. 

 

There are those who do not appreciate 

“verbal” autistics “speaking” for “non-verbal” autistics.  

But I would ask them to consider this:

 

“If I’m happy for Mel, a non-verbal autistic, to “speak” for me through her writing then why wouldn’t a non-verbal autistic be happy for me to speak for them?”

Image from referenceforww2.tumbler.com via Pinterest

Because, at the end of the day, others are assuming speech is the first language of those of us who verbalise.  But it may not be.  And others may assume those of us who don't verbalise can't communicate effectively.  But maybe it’s the recipient who’s not “hearing” effectively.

 

As mentioned, I consider my first language to be autistic.  I “speak” using a variety of devices, depending on my audience, my ability & capacity in that moment.  I’m often comfortable communicating in pictures, illustration, symbolism, telepathy &, most recently, clay.  But as many don’t seem to be tuned into those methods, I resort to spoken & written words (with a good dose of supporting hand gestures & exaggerated facial expressions) in the hope of being understood.  

Maybe, having thought my first language was verbal for so long, I haven’t yet found my authentic autistic “voice”, hence the mix, the chaos, of communications from me.  

I’ll keep working on it.  

Hand Shaped Magazine Rack by Barbora Zilinskaite: Image via Sight Unseen

The autistic author Tom Angleberger wrote a great article for The Guardian & talked about the challenges of word flow:

" ... the words are usually either coming out of my mouth & driving everybody to desperation, or flooding my brain & driving me to desperation."

If you want to “see” how I feel most comfortable “speaking” visit me on Pinterest @saralawler because, actually, it’s all in the pictures!  Specifically these boards: My time, An Affinity with A | all things autism & Out of the mouths of autistics.

For even more diverse autistic & neurodiverse voices & their own unique forms of communication, 

see my board The A Tribe.

In a squirrel’s nutshell, 

Image by Red R on flickr via Pinterest

I truly believe the bulk of autistic difficulties & perceived deficits arise from being native Autistics talking Autistic (first language Autistic) but not recognised as such.

 

Think of us as this & we may all find a more effective, accepting, inclusive, enabling way of being ... of living & working together, on equal terms, for mutual benefit.

Value our different ways of thinking, manifested in our different ways of “speaking” & communicating.  

 

Because to change us is to disable us.  

Image uploaded by Ipereza on Pinterest

Yours faithfully

Native Autistic Talking Autistic

First Language Autistic

#AutismRich

@anaffinitywitha

AnAffinityWithA.blogspot.co.uk 

P.S. Aye-Aye symbolism & general word play ;)

Aye-aye?

 

Me by Me (Native Autistic Talking Autistic)