Five men aged 18-21 gather at Anna Lechleiter’s S2C (Spell To Communicate) studio in Naas, Co Kildare. They’re here to discuss self-advocacy.
Their discussion takes place without speech.
Roy Yerrakadu, Nicolas Segrera and Cian Fullam (who have travelled from the US on holiday with their families), alongside Max Whelan, and my son, Caoimh Connolly Murphy, both from Dublin, are autistic “non-speakers”. While they can create vocal sounds – and several can enunciate certain words, even whole phrases – reliable communication through speech is beyond them.
Behind this disability is the apraxia they share: a neurological condition that creates brain-body disconnect. None of these young men can manage the rapid oral-motor movements required by speech, or the subtle fine motor movements required by handwriting. Their bodies can be impulsive and easily agitated. Their heightened sensory systems leave them susceptible to becoming overwhelmed and to meltdown.
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My body won’t do what my brain asks it to do; my body does things I don’t want it to do
— Caoimh, now 19, when he finally acquired open communication on the letter-board six years ago
Their disabilities put this group into the most marginalised and misunderstood wing of the “severely autistic”. Routinely, non-speakers’ speechlessness is misinterpreted as cognitive impairment. Yet they can be among the brightest members of our society.
The young men gathered in Naas are in the first wave of non-speaking autistic people to have been methodically taught, over months and years, the purposeful arm movement of pointing accurately at letter-boards. For success, they need the support of skilled communication and regulation partners.
“My body won’t do what my brain asks it to do; my body does things I don’t want it to do,” wrote Caoimh, now 19, when he finally acquired open communication on the letter-board six years ago.
Kind words of support and encouragement flow slowly, letter by letter, between these young men, as they spell to communicate.
Together, they write an acrostic poem: Self-Advocacy.
Some compassion for our impulsive bodies;
Emotions run high, stay with us in life.
Language is so much more than speech.
Facing the reality of our lives is hard, have some empathy;
All humans need community. We are no different.
Difference is in the eye and ear of the beholder.
Vulnerable as we are, we are also unbelievably resilient.
Our bodies are not a representation of our hearts and souls.
Caring is sharing our experiences with each other.
All we need is to be accepted as we are.
Come along on this journey with us; you will never be lost.
You are infinite in your power to reach others.