'I taught myself to read when I was two, but no one knew until I started RPM'

Two years ago, I brought my severely autistic 11-year-old son Caoimh to our first Rapid Prompting Method (RPM) workshop.

Caoimh can’t speak. Agitated and lashing out, he eventually got out of the car and allowed his rucksack to be put on. I attached a strap from his rucksack to the jacket of his assistance dog, Cosmo, the massive Golden Shepherd who enables us to go out into the world.

We burst into the lobby of the hotel in which the workshop was being held. Everyone stared at the boy, who stopped and started and shouted wordlessly, making bizarre gestures, tied to a hound.

RPM facilitators Erika Anderson and Amy Campbell have been brought from the US by RPM Ireland, an organisation set up by a group of Co Mayo mothers, whose severely autistic non-speaking children now communicate fluently through letterpointing.

Erika sits beside Caoimh and rapidly delivers a lesson on how American bald eagles became endangered: DDT sprayed on crops blew into lakes and contaminated the fish upon which the eagles preyed, thereby weakening the birds’ egg-shells, so they broke soon after being laid.

Erika’s constant writing down of key words on a piece of paper; her requests that Caoimh show his comprehension of each short statement she makes by offering him right and wrong paper choices; her holding up of three large, metal stencils with the alphabet divided across them, putting a pencil in Caoimh’s hand and prompting him to spell out the answer – all this breaks into Caoimh’s consciousness.

Caoimh stares at Erika, gobsmacked. He gets more and more answers correct. Erika asks him to spell “lion” by poking the pencil into the letters on the stencil. He gets every letter right. A bolt of lightning hits me – my boy knows his letters.

All his life until now, educators and therapists have spoken to Caoimh slowly and sparsely, on the presumption that his understanding of language is extremely poor.

I believed there was much more in Caoimh’s mind. That’s why I kept fighting for a way to reach him, and for him to reach me.

Communication

Two years later and Caoimh is now “talking” by pointing with a pencil to the letters on a single metal stencil. We are overjoyed to be able to communicate at last, beyond the requests for tangible items that Caoimh makes using his book of pictures, which is vitally important for getting his basic needs met.

Teaching Caoimh to letterpoint requires study, practice, ongoing workshops and professional supervision of my teaching skills. It's cost thousands of euros, fundraised by literary pub quizes run by my book club pals, and comedy benefits featuring The Nualas and Foil Arms & Hog – organised by my sister and brother, Geraldine and Conor, and a dedicated group of friends – and attended by the generous community who support the Caoimh Connolly Trust.

The journey to letterpointing has not been easy. Puberty hit Caoimh like a hurricane, precipitating appalling anxiety, obsessive compulsive disorder (OCD), self-injury and aggression, including Caoimh battering me during our RPM sessions. I had to give up for several months, and focus all my efforts on therapeutic and psychiatric interventions to help Caoimh through teenage crisis.

Caoimh has been misunderstood and locked in for most of his life. The first times he really expressed himself, he sobbed for hours in relief, and in sadness at the confinement he’s lived through.

One of the first personal (as opposed to lesson-related) statements that he wrote, was: “I love you. Thank you. You are a great mum.”

When Caoimh was seven, he’d often grab the homework copy his then 10-year-old brother, Fiach, and scratch violent pen marks over the pages.

Highly literate

I was told for years that there was not a lot going on in Caoimh’s head. Now that he can letterpoint, he shows himself to have wide knowledge, and the vocabulary and spelling ability of a highly literate adult.

People ask, why doesn’t Caoimh type? Certainly, this is the goal, and some of the Mayo kids ahead of Caoimh are there. But it’s taken years for them to develop the necessary fine motor control. You might as well ask of a child starting the piano, why doesn’t he play Rachmaninov concertos?

In a dream, through X-ray eyes, I see Caoimh underground. He is running, lost and frightened, in a maze of burrows. I tear at the soil, desperate to release him. I awake in panic: then relief floods through me.

I have spent 13 years searching for my son. Now he’s here.

RPM features as part of the documentary, Autism & Me, on RTÉ One at 9.30pm, Monday, February 20th. For more on RPM, visit rpmireland.com

"Many people think that autistic people aren't smart. They leave us out of life so much" by Caoimh Connolly, age 13

Before RPM I felt so trapped. Nothing in my mind was able to come out. Pictures aren’t good for thoughts. It’s too difficult to write with a pencil. Talking is impossible. My body doesn’t do what my brain asks it to do.

Others thought I had low intelligence. Then I started RPM. Now I’m letterpointing I can show my true intelligence. I am so smart. Others underestimate me. I taught myself to read when I was two. No one knew I could read until my mum started RPM.

Other autistic non-speaking people should do RPM. They deserve the chance to learn how to communicate. Yet the opportunity isn’t there in school yet. Parents need to demand that their kids get the same chance that I am getting. It means that my life has purpose. Others need help to allow them to communicate so they can be free.

Many people think that autistic people aren’t smart. They leave us out of life so much. Mainstream education is too stressful for many of us so we end up in special needs classes so we can cope.

I think rules need to be made so that my type of autism no longer means that we get weak education. Nothing is more important than demanding real communication for us. Nothing. Let’s really work together to achieve it.

Hundreds of people need help to achieve what I am learning to do so they can live in hope of normal lives without restrictions.

Communication is the key to our freedom in life.