My Chronicles of Autism - Today, I am a Dastardly Coward .....

I have been called many things in my life, some of them pleasant and some of them …. let’s be honest, not too pleasant at all, but recently and with some regularity, my grandson has been very vociferous in letting me know how he feels about me telling me very loudly, clearly, and as often as possible that I am “Dastardly Coward”.?? This, in my humble opinion, is much better than “f*&king grandma” which was my title before Christmas, but its still not great and does not really conjure up the warm feelings of security, love and affection I feel when I think about my own grandparents.

Now before you become too alarmed, I am confident he doesn’t really think I’m dastardly, nor does he think I’m a coward. He loves me very much and I enjoy the most wonderful, if slightly unconventional relationship with him but he is autistic. For him this means despite having words or speech he can draw upon, he would still be described by many people as non-verbal for his inability to communicate in the usual way, and by professionals he is described as having a condition called “Echolalia”.

Echolalia is an incredibly hard word to say, I still haven't mastered it and it certainly isn't a word I'd heard before I was forced on to this journey of discovery. And it is for me to face into the fact, as hard and as shameful as it may be, that I have been forced this way due to my own personal circumstances. However that's another blog entirely - let's get back to this one.

Echolalia is defined as the “unsolicited repetition of vocalisations.”? It can be an immediate reaction to a stimulus, or it can be a delayed response, coming long after the stimulus (aka trigger) and therefore appearing to make no sense, but in reality the autistic person has been sitting with the thought and the response for some time, and it makes perfect sense to them.

In my grandson’s case, his responses are very often immediate, repeating the scripts of his favourite movies to communicate and let us know how he is feeling. So, whilst I can’t have a traditional conversation with him in which we trade memories, information or anecdotes about our day, if a stimulus is triggered, he can let me know how he feels about something by reciting a phrase – or in some cases a very emotional monologue, with facial expressions, supporting body language, and even occasionally using props or a song – from his favourite Disney movie.? This can be hilariously funny, but to him its serious stuff. Laugh at your peril.

Right now, he is very into an old Disney movie called The Black Cauldron. There’s a moment in the film where our hero is unhappy and berating another character, a dog called Gurgi for failing to meet his expectations. There’s an exchange of dialogue in which the phrase “dastardly coward” is used.? My grandson feels this moment deeply, he identifies with the emotion and the feeling of disappointment. He understands the hero is unhappy, ?so when I hit a stimulus (aka a trigger) that leads him to have a similar feeling, perhaps asking him for the ten thousandth time not to bounce on my sofa, or for the trillionth time not to hit me on the head with a torch because it hurts, he’s not happy and feels the injustice of having to stop those things which he enjoys.? It brings to his mind the anger and disappointment expressed in the film and he uses this to let me know exactly how he feels about me! I am at this moment a "Dastardly Coward".

Overall, I am ok with being a "Dastardly Coward" because he has every right to let me know how he feels. It’s up to me to recognise the emotion he is feeling and to receive those words for what they are – a heads up that he’s not having it, he is going to continue to bounce on the sofa and he is going to continue to hit me on the head with the torch.? Not great for me, but I would rather that than have him unable to express himself, living with only an internal dialogue and never knowing how he feels or sounds.

I know its a privilege to hear his voice. For some families with autistic children, they never hear their child’s voice, and that must be a torture for everyone. As parents and grandparents of neuro-typical children, we under-estimate the power of reciprocal language and verbal expressions of affection. These things build bonds, they create the deposits we draw from to get us through the lows of life.

Thankfully, the communication is not all negatively phrased. My grandson will use the same techniques to let me know he feels loved, secure and content, and importantly to me (perhaps even a little selfishly) that I am loved by him in return. Admittedly he does this far less often than he berates me, but I will take my wins where I can get them!

Just last week he borrowed a line from “The Boy, the Mole, the Fox and the Horse” – a beautiful story available on i-player, if you haven’t watched it already it’s a must - and he said to me with absolute clarity, not missing a single beat from the line “Grandma, you know, sometimes your mind plays tricks on you, it can tell you you’re no good, that it’s all hopeless, but I’ve discovered this, you are loved, you are important, and you bring to this world things that no-one else can, so hold on.”

And he took my face in his little hands, and he kissed me on the forehead. I choose to believe that is him telling me that he loves me, and even more importantly than my own selfish desire to be loved by him, that he is responding to my love for him.

Why am I telling you this? I am telling you this because before he came into my life I did not know any of this, I had never heard the word echolalic speech. And if I am truly honest, beyond looking it up in a dictionary, I would have done little more. But my experience has taught me there are so many people out there who assume “non-verbal” means entirely unable to communicate, and in some cases, they assume it also means unknowing or unfeeling. Believe me, he hears, he understands, and he feels.

It is my job to listen. To listen very, very carefully and to work incredibly hard to make sense of what he is telling me, why he is telling me it and how I can make it happen for him.

Imagine what the world would be like if we all did this, because the moral of this story does not just apply to kids that are non-verbal, it applies to anyone who does not look, sound, or behave like we do. The divisions appearing in our society are ever widening. We must work harder to find commonality, and to borrow a phrase from my grandson to “bring to the world the things that no-one else can”. If we put the effort in, the rewards are magnificent.

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