“You have to accept that Francesco is what he is and there is not much going on up there”.
In the 16 years since Francesco’s diagnosis of autism I had heard this sentiment expressed many times and ignored it. But this time it came from my mother so the words hit me hard and I felt my determination to relieve my son of his burden soften ever so slightly. Was it really now time to become pragmatic? Time to accept his condition and turn my attention to care instead of cure?
Francesco was 12 months old when we first started to worry and 18 months old when we became very concerned about his behaviour. It was 1995 and we were based in Milan. He had no speech, was crying constantly, banging his head, flapping his hands, lining up objects. Classic symptoms of autism to an expert but baffling to us and just signs of a spoilt child in the view of our local GP.
After a casual but alarming conversation with a close friend whose son had recently been diagnosed with autism, my husband and I swiftly located an expert in the disease based in Siena and took Francesco to see him. The feed-back from Professore Zapella was not good. Francesco was autistic and we should return to London as quickly as possible where a nascent interest in behavioural therapy was taking root. The drive home from Sienna was a quiet one.
But the next day began a blur of activity that saw our entire family uprooted and back in London within four weeks. Through the same friend that first alerted us to Francesco’s typically autistic behaviour, we attended a meeting in a church hall in Barnes. A small group of parents talking about the exciting impact of behavioural therapy in the USA and how it might be introduced to the UK. From that meeting, and the determination of some of the other parents there, grew PEACH, now probably the foremost UK charity promoting Early Intensive Behavioural Intervention (EIBI).
As I sat listening to the speakers and wondering how on earth I would access EIBI treatment for Francesco, a quiet young lady introduced herself to the group as Kim Fellows and explained that she had just returned from the USA where she had spent time studying and practising the Lovaas Method of EIBI. By the end of that meeting, I had persuaded Kim to come and work with Francesco full-time and his treatment began.
Eight hours a day, forty hours a week, Kim worked with my son on the most elementary things. Through perseverance and repetition, she taught him to sit quietly, to listen to basic instructions and to express his basic needs in single words. Over the course of the year, Kim trained other therapists to handle the day to day sessions with Francesco and she moved on to a supervisory role enabling her to expand her influence and extend EIBI to other families. Francesco was making progress. We had hope.
We continued with Lovaas, both in a one to one lesson environment and with a “shadow” alongside him at a special needs school. We integrated VBA (Verbal Behaviour Analysis) at 14 years old in an effort to improve his communication skills. Along the way we tried anything and everything else that we could find in an effort to improve his condition, from ensuring a gluten and casein free diet to injecting him with Secretin when it was suggested that the hormone might assist brain function in autistic children.
At 16 years old, Francesco was a young man and he had certainly made progress. He was calmer with far less stimming type behaviour and he was much more closely integrated into the family. He could generally take care of his own hygiene if told to and could communicate his basic needs in short, practised phrases. But his communication and comprehension was still very poor and what he did say was limited to just a few words and usually a repetition of the same questions regarding what food he would be eating or where he would be going. In terms of comprehension, he understood certain instructions but his responses to questions asked of him remained irrelevant and inappropriate.
As he got older, we tried to stimulate his interests with a range of activities from joining the Chicken Shed Theatre Group to catering classes, sports activities, gardening groups and many more. Francesco tried but abandoned all of them and remained happiest watching Disney movies in the security of his bedroom.
And so to my mother’s words.
But so also to a 60 Minutes feature showing a demure Indian woman called Soma Mukhopadhyay that had taught her son Tito to communicate typing on a PC using a method she had devised called RPM. She was now based in Austin, Texas and working with children through an organisation she had founded called HALO. My instinct told me to try it, just as I had tried everything else, so I booked our session and we were soon on our way to Texas. My mother, despite her anxieties, was by my side as she had always been. What followed remains the most extraordinary experience of my life.
Francesco sat in a chair at a simple table with Soma standing beside him speaking to him but not looking at him. Nor was Francesco looking at her but Soma continued, confident in the knowledge that he was listening. She began to describe Egyptian history, regularly pausing to question him on what she had just said and offering him options on two scraps of paper as a means of response. He pointed at his choice with a pencil. His selections seemed arbitrary and lacking in conviction, but they were accurate time after time. From scraps of paper she progressed to large letter boards and then a single letter board.
Over the course of the week, Francesco was able to point out letters and form full, coherent and articulate sentences. Not short sentences; long ones with elaborate grammar. He communicated his feelings for me, his father, his brother and sister. He expressed his anxieties about his autism and his struggle to find a place in the world. As he pointed and spelled out his feelings, my mother and I cried. She took him in her arms and apologised for the words she had expressed to protect her daughter from the pain of false hope. She did so in the total confidence that he appreciated her sentiment even though his expression belied his understanding.
The visit to Soma changed all our lives. We understood that Francesco understood, so we treated him accordingly and our lives improved immeasurably. But we could not replicate what Soma had achieved. Using the letter-board with Francesco ourselves yielded nothing but the same one word answers or phrases he was able to articulate before. Clearly RPM was a much more complex methodology than first appeared.
The journey that is HALO RPM UK had begun.
Andrea Furlotti (mother and founder of HALO RPM UK)