Saturday 27 May 2017

Mum Adrienne Murphy on the life-changing technique that allowed her non-verbal son to communicate

Patience, persistence and sheer bloody-mindedness have helped Adrienne Murphy to teach her non-verbal son to communicate. It has opened up a whole new world of possibilities for him and his family

Adrienne Murphy with her son Caoimh Connolly, his brother Fiach and autism assist dog Cosmo. Photo: Tony Gavin
Adrienne Murphy with her son Caoimh Connolly, his brother Fiach and autism assist dog Cosmo. Photo: Tony Gavin
Thirteen year-old Caoimh Connolly who uses a stencil to communicate. Photo: Tony Gavin
Sixteen year-old Fiach Connolly. Photo: Tony Gavin

On a hot, blue-skied day in West Cork last summer, my 13-year-old son, Caoimh, braced himself for one of the greatest adventures of his life so far.

A family day-trip to Mizen Head wouldn't score high in a typical teenager's excitement ratings. But Caoimh isn't a typical teenager. Aside from being a highly sensitive and unusual human, Caoimh is disabled, non-speaking, and severely autistic.

Caoimh was locked in, unable to communicate beyond basic needs and wishes, until last year - when, after massive sustained effort on both our parts, he finally acquired the manual dexterity to point with a pencil at letters on a large metal stencil.

That breakthrough came through the revolutionary teaching technique called the Rapid Prompting Method (RPM). Because of RPM, Caoimh is among the first few thousand severely autistic non-speaking people in the world to achieve real communication. (There are about 40 others in Ireland, and the number is growing.)

Caoimh's sensory processing differences, anxiety levels, health problems, fine and gross motor disabilities, obsessive compulsive disorder and stress-related extreme behaviours have drastically limited his childhood experiences. For example, by the time he got his assistance dog, Cosmo, at the age of six, Caoimh had been house-bound (apart from going to special school) for two years. It took being attached to Cosmo for Caoimh to access the outside world.

In West Cork, I spend the whole morning preparing Caoimh for our Mizen trip. I cook his non-processed everything-free wholefood for the day. I pack his change of clothes, his visual schedule, and his book of Velcro-ed pictures with which he communicates his basic needs.

Then I show Caoimh a map of West Cork, charting for him the route we're taking on our hour-and-a-half car journey. I present him photos of the Mizen lighthouse and its Atlantic coastline. I sit him down and read him my own hand-written, two-page story about our excursion, including what we will be doing at Mizen and what he can expect to see; a forewarning about the tourist crowds; rules for his behaviour; and reminders that if he gets stressed, he is to invoke the relaxation response that I've been teaching him.

Without the gifts of RPM, I would have been unable to prepare Caoimh sufficiently for the trip.

My 16-year-old son, Fiach, and my sister, Geraldine, are coming with us. It would be dangerous for me to take Caoimh on an excursion like this by myself, given how his behaviour might go.

Caoimh runs up and down the length of the bungalow, hyperactive and agitated, vocalising loudly. I make him sit on the couch. I spend 10 minutes 'regulating' his nervous system with the joint-compressions that Caoimh's occupational therapist has taught me. I finish with my own hand massage technique.

"Lovely to get a hand massage," says Geraldine.

"That really calmed him down," says Fiach.

We tell Caoimh we know he can do it, and embark on our expedition. It's 11am. I feel I've already put in a full day's hard work.

The most disabling aspect of Caoimh's condition is that until very recently, his mind and thinking were profoundly misunderstood by most of the people around him - including doctors, therapists, educationalists and care-givers.

The misunderstanding is not the fault of these individuals. It is the fault of the prevailing hardwired, erroneous theory that autistic people who are non-speaking (or 'non-reliably speaking', in the case of those with limited, or seemingly non-sensical, speech) de facto have poor understanding of language and an 'intellectual disability' - aka cognitive impairment/delay and low IQ, and previously termed 'mental retardation'.

So while, as his life progressed, Caoimh's sensory sensitivities were increasingly understood and addressed with occupational therapy; and his anxiety, need for routine, poor impulse control and 'behaviours that challenge' were met with psychological interventions based on visual scheduling, and rewards and consequences for behaviours, and an acceptance of how stress-free his environment needs to be; and he was taught basic means of communication using a Picture Exchange Communication System (PECS), and as much sign language as he was able, given his very restricted hand movement ability - while all this was going on, Caoimh's true intelligence remained hidden.

The presumption that Caoimh's comprehension of language and concepts is very poor has controlled and directed every aspect of his life. I remember being devastated after an assessment when Caoimh was five. The psychologist told me to limit the language I used with Caoimh to short simple statements, such as "Go car."

Through tears I asked, "Are you telling me I should stop talking to my child?" She was. The reasoning was that because Caoimh was incapable of understanding speech, the blur of chat would serve only to distress him, and hence cause yet more 'challenging' (ie, appalling) behaviours.

It's true that in his heightened states, which are frequent, Caoimh fares best when spoken language is curtailed.

In the midst of the fight/flight response, when it is impossible to think coherently, it's much more calming to have a laminated sheet handed to you with text and visuals saying, 'First dentist, then home,' than to hear your stressed mother's agitated voice repeating, "It'll be over soon, everyone needs to get their teeth checked, you can relax when we're home, calm down."

Caoimh wouldn't be the first male on the planet who, when feeling stressed, bad-tempered or upset, needs to be left alone and not spoken to. It's because speech, when you're in that state, is aggravating not because it's incomprehensible.

Imagine how much more irritating spoken language might sometimes become when you're only ever on the receiving end of it.

Aside from Caoimh's need for everyone to zip it when he's stressed or sensorily overwhelmed (consider hallucinating on LSD 24/7 for a taste of the autistic sensory world), another, fundamentally misunderstood aspect of Caoimh's autism stems from his misdiagnosis of intellectual disability.

Caoimh was locked in for 13 years. During that time he underwent many psychological assessments to gauge his intelligence.

Caoimh comes out from these tests with a 'moderate' intellectually disability - an IQ of 35 to 49 (average IQ is 100). For people who can't speak, pointing is used to indicate comprehension during the tests - for example, out of a range of four pictures, the child is asked to point to the picture of fire. Picking the wrong picture is interpreted as not understanding the word.

This method may work for someone who can control their body. But people with Caoimh's severe type of autism can't control their bodies. Not only do their bodies not do what their minds ask them to do - their bodies do things their minds don't want them to do.

People with severe non-speaking (or non-reliably speaking) autism have a neurological problem that results in extreme brain-body disconnect. That's why real speech is impossible for them, the potential for sign language is very limited, and typing is a skill that may take years to acquire.

Brain-body disconnect is why, at age 13, Caoimh still can't write, or wash his hands or brush his teeth by himself.

It took several years of daily practice when Caoimh was very young, shaping his index finger into a point, before he finally acquired hit-and-miss pointing ability around 6-years-old. Even now, Caoimh's pointing isn't reliable.

During IQ tests, how can Caoimh show his comprehension through pointing, when the stress alone would make his pointing go awry?

In a nutshell: Caoimh is told to hand the assessor the blue cup. He picks up the yellow plate. He passes it to me, not the assessor. The assessor marks: "Failure to understand 'blue', 'yellow', 'plate' and 'cup'; confusion between the words 'me' and 'mum'."

Down goes the label: intellectual disability. Caoimh's entire education; the professional advice on how he should be spoken to; goals based on his potential; his future prospects; belief in whether he has anything in his mind about which to communicate, even if he had a way to - all of this is now governed by his 'intellectual disability', a stamp he received first as a toddler, and was repeatedly marked with, up until two years ago.

Here's the heretical, myth-debunking truth: non-verbal autism is not a severe form of Asperger's Syndrome. It is a subset of autism that shares the sensory processing- and neuro-differences of other types of autism, but also includes a movement disorder - severe dyspraxia - that binds and misdirects the autistic person's mouth, hands, body, and even facial expressions.

This is what we mean by 'locked in'.

There is nothing wrong with having an intellectual disability. But when a person has no means yet to show their comprehension, and a body that may not be under the control of their brain, how can you be sure what is, or is not, happening in their minds?

Until the advent of sign language, the presumption was that deaf children were intellectually disabled. No one thinks that any more.

The cutting-edge mantra in autism is this: Presume competence.

It is cruel, unjust, and dangerous (given the self-injurious and aggressive behaviours that can result) to leave disabled people islanded and drowning in the same babyish school curriculum right up to their late teens, because they are unable to prove, through pointing or some other body movement, their understanding of - and hence merit in being moved beyond - the simplest of concepts.

No one ever made a concerted effort to teach Caoimh to read - the unconscious reason being that it was pointless. Yet when I started RPM with him when he was 11, it gradually became apparent, to my joy and delight, that he had the vocabulary and spelling ability of a highly literate adult. He says he taught himself to read at age two. It was impossible for him to show anyone his ability to spell, until RPM helped him acquire control over his hand movements and sensory distractions.

A year ago at school, Caoimh was still trying to prove his understanding of the difference between 'big' and 'small', through consistently correct (and hence impossible) matching and pointing; while at home, through RPM, I was plumbing the depths of Caoimh's true intelligence with questions like: 'If time is the noun, what is the adjective?'

In answer to which - after 18 months of daily practice of hand-movement skill-building on his large metal stencil - he now had the fine-motor ability to slowly and painstakingly point out: 'T-E-M-P-O-R-A-L '.

The school Caoimh's been attending since last September - St Joseph's Special School in Balrothery, Tallaght, Co Dublin - is fully supportive of developing Caoimh's letterpointing as a way for him to show his comprehension of age-appropriate academic material. We are enormously relieved by this, given that most kids like Caoimh remain trapped at toddler level for their whole educational lives.

Imagine how isolating life would become if even your loved ones withdrew their inclusion of you in age-appropriate chats, book-reading, discussions, observations and life-lessons through spoken language. And instead of being nourished by this ever-evolving richness, you were left for years to stagnate with communications such as, "Go car."

Imagine having no way to tell the people talking over your head that in fact you can understand language, and that you are not only intellectually intact, but extremely smart.

The flawed theory that severe autism is an input as well as an output problem perpetuated Caoimh's exclusion from society. It curtailed his engagement with stimulating life experiences and knowledge. It caged him behind invisible bars, isolated and emotionally stranded.

For years Caoimh has lived in solitary confinement. Now that he's out, he uses every opportunity he gets to speak on behalf of the hundreds of thousands of non-verbal autistic people around the world who are still trapped.

So much for 'lack of empathy' - another mistaken theory about autism.

At Mizen Head, on the most beautiful day of the summer, you don't have to have autism to be overawed by the beauty and power of cliffs and sea.

For Caoimh, whose life has been so restricted, the experience of the cliff walks is mind-blowing. He appears reasonably calm at first, but he soon starts to engage in increasingly bizarre behaviour, in order to regulate his senses. He dashes about, shouting wordlessly, one arm weirdly stuck up in the air; he runs around in circles; he gets trapped in corners watching his own shadow-play. He takes off at a shockingly fast pace up a very long steep flight of steps, with me in pursuit.

At the lighthouse visitor centre, he becomes stressed by the crowds. He stampedes around the rooms, pacing frantically and droning at the top of his voice. I brazen people's stares and judgments. We have a right to be here.

"Your son is anxious," a woman points out.

"Yes, I know," I say. "He's autistic."

That evening, for the first time ever, Caoimh is able to tell me what impressed him most about a place he'd never been to before.

His answer: "ROLLING WET RIP-TIDES."

When times get tough, and I am exhausted, and I wish I had an easier life, I remind myself that I've freed my son.

Everything else is icing on the cake.

*  For more about RPM, visit rpmireland.com

Fiach: Bouncing back

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Sixteen year-old Fiach Connolly. Photo: Tony Gavin
 

Living with a brother who has autism is a blessing and a curse.

For months at a time, Caoimh could be an absolute angel child. Barely causing any trouble, he would make everyone in my family happier. He would hum instead of shout, skip instead of stomp, hug instead of hit. But then I'd wake up and find my brother has been replaced by some sort of evil doppelganger - one that is no longer a sweet, loving kid, but a screaming, aggressive madman.

In my opinion, a lot of this anger comes from the frustration of not being able to communicate with people. For the first 13 years of his life, Caoimh's only way to talk with us was the word 'no', pointing and PECS. This is a method of communication in which he has a folder with pictures of food, activities, facilities etc that he gives us to tell us what he wants. However, it lacked the depth that he needed to express himself. Then we came across RPM.

RPM (Rapid Prompting Method) is a fantastic method of communication. It involves my mother sitting with Caoimh and holding up a letter board. On it is the entire alphabet. Caoimh uses a pencil to point out what letter he wants and my mum writes it down. Letter by letter, word by word, Caoimh can start sharing what is on his mind. The goal is that he'll be able to type independently on a device.

Now that Caoimh has become proficient at talking to my mum like this, I can soon start learning how to communicate with him using the same method. Knowing that Caoimh and I have a future where we can talk to each other is an absolute game-changer.

Caoimh's odd behaviour has led to some amusing circumstances. One time, he was bouncing on his trampoline, when all of a sudden he was desperate for a drink. He jumped off the trampoline and sprinted inside, where he locked his eyes on a glass vase holding flowers. Before my mum could stop him, he ripped the flowers out, flung them across the kitchen and chugged down half the water in the vase.

Living with Caoimh has many challenges, but it also has many upsides.

I love him like anyone loves their siblings.

Fiach Connolly (16)

Caoimh: RPM freed me

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Thirteen year-old Caoimh Connolly who uses a stencil to communicate. Photo: Tony Gavin
 

I am a thirteen-year-old non-speaking autistic boy wrongly diagnosed with intellectual disability. Tonnes of useless words have been written about me - wrong theories that we aren't smart. News is that we are!

When I was small my IQ was wrongly assessed as being low. Wrong IQs fail people. Know that people with autism who can't speak are so wrongly treated. We get misdiagnosed with intellectual disability when in fact we are so intelligent.

Since I started letter-pointing I feel so liberated. My whole life has changed because I can communicate. I can now imagine a life in which I'm free instead of trapped.

Other non-speaking autistic people need help to get RPM not SLT [speech and language therapy]. I spent years trying to learn to talk without success when I should've been learning how to letter-point.

My hope is that my words reach the right people so that many more autistic people may get the chance to learn to communicate.

It's wrong to withold a way that can free someone from a life of isolation. We need to work together to bring RPM to those who need it. Let's do it. My purpose in life is to let the world know that wrong things are happening to people like me. Please help us to spread the word that RPM works to free trapped people.

To please my mum I'll mention some sensory aspects of my autism.

You learn to read by yourself at a very young age because you have photographic memory. You see stones as jewels. You hear stones. You feel your mind leaving your body. Your senses are so powerful that they take over.

We are like people from another planet. Please understand this. My autism isn't me. Try to see that so we can be included in society.

The world needs our intelligence now to make it through to the next stage of evolution. We will show the way to where we need to go. To understand us is to understand what needs to change in the world.

Please try to understand us.

Caoimh Connolly, letter-pointed on a metal stencil

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