The Autism Conference– Life Beyond Diagnosis

Who would understand those eyes from which tears never fall no matter how hurt; those thoughts that constantly live with an ascribed inferiority amidst the inability to understand an insult or an incursion into one’s dignity?  Only those who respond with kindness. 

by Ruwantissa Abeyratne in Montreal

I pray you'll be alright and watch us where we go and help us to be wise in times when we don't know” ~ From the song by Celine Dion and Andrea Bocelli

On 3 and 4 August 2021 the 11th Annual Autism Conference will take place in Lagos, Nigeria on the theme “Life Beyond Diagnosis”. According to the organizers: “the 2-day conference will bring together some of the world’s leading experts on Autism to share with us, amongst other insights, how we can best support children and adults living with Autism in our communities”.

We find autism inscrutable; incomprehensible; and enigmatic. There are times I wonder whether Churchill was defining autism when he called Russia “a riddle wrapped in a mystery inside an enigma”.  One of the most endearing parallels and definitive examples of autism is seen in Carrie Cariello’s  musings:

“It is up to you how you see me; as a nuisance, a tantrum, a disorder, or a curious lamb wearing the costume of a wolf. Can you look past my long, yellow teeth and matted hair, and find the soft, gentle child underneath?

Because of me, Mozart wrote long, complicated symphonies. His hearing was rumored to be so sensitive, he could tell the difference in the slightest tone.

Historians explain the way Michelangelo made sketch after sketch until the final pose was perfect in his rigid, unbending mind. Because of me, the Sistine Chapel explodes with light and color. Records show that Albert Einstein did terribly in school. He didn’t learn the same way as all the other kids.

And Sir Isaac Newton of the fallen apple had no friends. He didn’t understand people, and he insisted on a strict, unwavering routine.

And there is Temple Grandin; a woman so intelligent, so compassionate, that she revolutionized the cattle industry through sheer perseverance and determination.

You see, a still mind can still have great thoughts, and within even the quietest person, there is a voice. Or a painting, or a song.

I am so many things. I am hope and possibility. I am music and dreams, kindness, and color. I am gravity.” 

Exquisitely beautiful and wondrously articulate as these words are, they do not reflect the thoughts that go through an autistic mind.  This is because no one can lay claims to pretension to that ability. Not all the experts who come together in Lagos on 3 and 4 August nor  the academics with their speculative hypotheses  would be able to touch the vulnerability, the isolation, and the relentless clamour for recognition an autistic adult would feel in his lonely transition from the presumed innocence of childhood to the helpless intellectual destitution of adulthood. He alone would have to face the perceived social ineptitude a derisive society would ascribe to him with callous indifference.

One has only to look into the eyes of an autistic adult to see that he feels intensely while struggling to articulate his thoughts – that he cannot cope with how you made him feel.  That he does not wish to compete: but only to be valued.  That he is incapable of understanding sarcasm or intellectual subterfuge.  That he loves and appreciates you no matter what and reciprocates love unconditionally. That he will always treat you as an end and not as a means.  How else can a parent explain the unexpected  and repeated hugs from an adult son who does not corrupt such gestures with the inanities of rhetoric that accompany the devious neuro typical mind?  Who else would jump for joy at a simple accomplishment with a whoop and an exclamation of “I did it!” just to convince those around him of his value?

Who would understand those eyes from which tears never fall no matter how hurt; those thoughts that constantly live with an ascribed inferiority amidst the inability to understand an insult or an incursion into one’s dignity?  Only those who respond with kindness.  Kindness is not mere altruism.  It transcends overt benevolence.   Some good examples of kindness are given by Autism Speaks: “kindness is being inclusive of everyone, regardless of your differences; kindness is understanding that not everyone experiences the world the same way you do; kindness is seeing the value in all people; kindness is not judging someone who flaps their hands when they get excited; kindness is not staring when someone’s child is having a hard time in public but instead asking if they need help; kindness is focusing on someone’s ability, instead of their disability; kindness is keeping an open mind if someone doesn’t seem to like eye; kindness is addressing someone with a disability as well as their caregiver; kindness is inviting someone into your group when you see they are by themselves”.

The Lagos conference is aimed at sharing ideas on “how we can best support children and adults living with Autism in our communities”.  As a parent, I believe that support should start with human dignity. I have often wondered how it would be if we entered their world and not try to coerce them into ours, with the exception of entering the world of Mozart for his complex symphonic scales or Newton for his laws of motion.  The beauty of the world lies in the warmth of a loving hug given without expectation of a return on investment; the total helplessness of one who depends on you for comfort and safety; and the abiding love that comes from the absolute ignorance of the deviousness of the world.

It is very important to discuss material support to autistic children and adults.  However, I hope the Lagos Conference touches on the deep sensitivity of the autistic child and adult  as well.  They are like the wind that whispers to a tree on a warm summer’s day arousing the sensitivities of its leaves that draw our attention not only to the shade under it but also to the life the tree offers.  They are like the unfathomable oceans and rivers that offer us the beauty within, and teach us humility.