World Autism Awareness Day 2nd April 2022

My path has been diverse, and it has always entailed working across SEND, teaching autistic children, supporting those diagnosed with dyslexia, ADHD, or children who are Twice Exceptional. It’s also been my privilege to guide staff with CPD in these areas. But lately, I question more and more whether such labels are either kind or helpful. In a world where everyone is put into boxes, might it be worth reconsidering the way labels are used to start treating our littlest humans as just that, rather than as a condition?

As we approach World Autism Awareness Day on 2nd April, I invite you to think more about this question. In 1962, a group of parents with autistic children set up what would become the National Autistic Society in the UK. They began the fight for autistic people’s rights. At the time, there was no provision for autistic children; they were often diagnosed with childhood schizophrenia and sent to institutions, and subjected to ‘treatments’ as barbaric as those from the Middle Ages. You would be relieved to know that in those intervening sixty years, attitudes have changed…except not everywhere. As recently as the last couple of years, France has continued to treat autism as a form of psychosis, to the point where children have been removed from parents and placed in care homes. And only five years ago, a technique called “packing” – in which an autistic child is wrapped in cold, wet sheets – had still not been legally banned there and reportedly was “still practised” on some children with autism.

Let me give you something more humane – a little nugget – to really consider my question and its implications for you and your school …

I remember a time when, much younger, I was teaching a diverse group of year ten boys the joys of Romeo and Juliet. A newly appointed advisor had insisted that it would be pertinent for them to take the GCSE examination. They had the opportunity to respond to a Shakespeare extract with a piece of coursework to be drafted, edited and submitted for external moderation. I decided the best way of engaging these boys was to set a question on Shakespeare’s use of language in changing dramatic moods in Act One Scene 5 of Romeo and Juliet. Baz Lurhmann’s fantastic film version, starring Leonardo DiCaprio and Clare Danes, was the most amazing resource. I carefully planned a lesson whereby the introduction was to watch the clip, and listen to the changing language, showing the different moods: Capulet’s grandeur, pomp and effervescence at staging his party, signalled by his use of iambic pentameter; Tybalt’s indignation and affront, demonstrated through furious hissing, assonance and complex alliteration when he discovers Romeo’s intrusion; and then Romeo’s dreamy soliloquy in the form of a sonnet when he first sets eyes on Juliet. The boys watched, rapt.

I was delighted at their engagement. So, undeterred by my initial trepidation about how this lesson might pan out, I ventured the all-important question: “How does Romeo feel at this moment?” Some of the boys had furrowed brows, but Robert, who had an autism diagnosis, shot his hand vertically past his ear, so keen was he to answer. His explanation was graphic and contained an expertly used expletive, clearly explaining Romeo’s feelings. Sniggers came from the others, some gasps, much shock.

Regular continuing professional development was given to us by the autism specialist, and the advice in such an instance was to not respond with surprise, anger, or dismay. So I remained calm. “Yes… you’re right, Robert, that’s certainly what he’s feeling, only if he expresses it using what we know as a swear word, he’s likely to offend her, and he won’t even get the chance to talk to her.”

Robert pressed on, perplexed,  offering a repeat of precisely what Romeo wanted. After all, it was what I had asked. As I was frantically searching for the best way to respond to this, thankfully Stan – an endearingly sweet and funny boy, who had had a brain tumour removed and could no longer ‘decode’ words to read – helped me out. “Robert!” he opined. “If you want to let a lady know that you like her and eventually want to be with her, you must be respectful. If I were going to show how much I liked her, I would write her some love poetry.” I breathed a sigh of relief and marvelled at how confident Stan was in expressing his courting skills and his open willingness to try his hand at writing sonnets!

Arnold, a boy with significant deafness, joined in. “Yes, Robert! Women need to know that they are respected. I would buy her gold jewellery.” Some enthusiastic nods from the other groundlings. Encouraged by the tide of confidence, Stevie, also autistic, enrolled himself in this facula debate. “Jewellery’s showing off! I would invite her for dinner; later, I could offer to cook for her.” I was beginning to bask in the glory of my earlier PSHE lessons, now evidencing that they had demonstrated measurable positive impact!

Robert, however, was persistent and repeated Romeo’s desires in even more colourful profanity. More sniggers, one gasp (from me, this time), less shock.

I caught myself. By now, I had managed to gather some sense of decorum and thought about how to intervene appropriately. “It’s Okay, Robert… let me see if I can give you an allegory.”

Although what we think we know about autism identifies that there’s an inadequate understanding of linguistic functioning and that there’s a malfunction in deciphering figurative languages such as metaphors and ambiguous phrases, there is also an idea that a parallel story, with a novel metaphor, might help to improve comprehension in autistic children. I hadn’t any other ideas, so this was worth a try.

“If you were out in your restaurant on a Friday night and you noticed a girl that you liked the look of, and you approached her, then you told her, in the way you have just told us, what you wanted from her, she would be very upset.”

“But why? It’s the truth. If we are hiding something from you, you’re always telling us, honesty is the best policy.”

There was something less on the spectrum about this response and more a sense of on the mischief continuum.

“Well, yes, it is; if you’ve hidden Stan’s lunch because you think it’s a joke, and he gets upset, then it is better, to be honest, and own up. But not if it offends someone by showing disrespect. Being loving enough and trusting someone enough to let them close is special, and if you do or say something without thinking of how it affects your potential girlfriend, she may never want to become your girlfriend. In this situation, it’s like having a diamond ring worth ten million pounds. If you give that ring away to her, as quickly as that, without working out if you are both in love and worth each other’s time and attention…well…that ring is valuable – worth so much money, and so much in emotional value and then you…say what you just said…and she disappears, along with your ring…well, you’d wish you hadn’t given it away so easily. You can never get that ring back.”

I could see something was dawning.

“Ahhhhhh!” he said. “I think I get it! You mean, it’s a gift, and if I give it away so easily, I’ll never get that gift back again, so it’s best to give it to someone special.” There was no mistaking his sense of sing-songy George Michael! I have to admit I was trying not to smile, amused by what I think was confident humour, emerging for the first time. At the least, I was amazed that his social and emotional skills had come on so significantly that he had grasped this from such a metaphorical, nay, almost Shakespearian perspective. Robert happily and mischievously nodded to himself and others around him and grinned. “I get it.”

I turned back to the whiteboard, mostly to get a sense of where we needed to go next and wishing desperately to draw a line under this event before Robert’s gathering confidence led us down another track. In previous lessons, using ‘Of Mice and Men’ as our shared text, Robert could not understand why Steinbeck could employ ‘Goddam crazy bastard’ as Lennie’s means of describing Curly, but he couldn’t use a more ‘choice’ word in his timed essay. I took a deep breath and deemed the lull a sign; we were ready to continue. Robert’s hand was again vertically pointing towards the ceiling, this time his fingertips a good five centimetres more elevated.

“Yes, Robert?”

“Miss? Supposing I have ten rings worth a million each?

No formal examination could have classified those boys accordingly. In the same way that no proper diagnosis of autism, ADHD, SEND, or any other label can determine what goes on in their vision of the world. We need a much greater understanding. I remember thinking then that if we can recognise that every person is made up of many parts and that no one part is the entire sum of a person, it will help end the stigmatisation and treat all children with the dignity and respect they deserve.

With that clear mission in mind, LifeWise has created a suite of lessons and an assembly that may help children, perhaps even teaching staff, appreciate what still needs to be understood when it comes to autism. In addition, they will encourage thought about whether we use the accompanying labels for inclusion or something more sinister.

The new national autism strategy for England was published last year, committing to a £73m investment in the first year. The strategy reflects most of the issues that the NAS raised in their Not Enough campaign and, importantly, includes children for the first time. They also persuaded the Government to change the definition of ‘mental disorder’ in the Mental Health Act to no longer include autism.

Incidentally, as a very honest and humane addendum, Robert could recite Shakespeare as if he were Gielgud, and Stan could identify character motivation without having read a word just by hearing a passage once. Stevie became the chef at my Mother’s nursing home many years later, when she needed full-time care because of dementia. He made sure to look after her with specially made cakes and treats and her all-time favourites – chicken nuggets! Now, there’s a nugget for you!