Enhancing the lives of children and adults with autism.
This article appears in The Clare People’s Association Year Book 2017
My passion for addressing quality of life issues for children and adults with autism began when my only child Tomás, was diagnosed with the condition, at the age of two. This was back in 1998, when services were scarce and educational provision was just evolving. During this time, I was completing a BSc in Sport and Exercise Science as a mature student in the University of Limerick. This too was a degree evolving, in its early stages of growth and development. It was led by the very brilliant motor psychologist Dr P.J. Smyth (RIP) and equally brilliant sociologist Jacinta O’Brien (RIP). Both were to have lasting influences on my life and career trajectory in the following years. After completing my degree, I worked as a Sport and Exercise Scientist in the area of exercise prescription and developed a particular interest in the whole area of movement programmes for children with autism, who typically presented with delay in this area. At home too, I could see that Tomas struggled to refine his movement skills. However, this was not to stop us. Together, we engaged in an active programme of daily running, walking and balancing particularly on the beaches of Spanish Point and Quilty. We would run on the sand and then traverse back to base across the rocks and grassy sand dunes, building on Tomas’s ability to further refine his movement. I also saw how being active presented Tomas with opportunities to use his emerging vocabulary, develop his comprehension and to socially meet and engage with others. Issues of sound, taste and smell often problematic for children on the spectrum, didn’t seem to bother Tomás. In 2004 and with P.J.’s support, I applied for and was successfully awarded an Irish Research Council for Science Engineering and Technology Scholarship to complete a PhD in the area of autism and movement skills, the first study of its kind in Ireland. My research further confirmed that children with autism and learning disabilities could all benefit from participation in activity and movement programmes, if the alphabet and skills of movement were taught with appropriate planning and support. I was on a mission to share my lived experience with Tomas and my own research findings, with our greater autism community, both nationally and globally.
In 2008, I joined the staff of University College Cork as a lecturer and researcher in the area of Sport Studies and Physical Education. Together with Community Workers in the Health Action Zone of the Health Service Executive in the north inner city, we drove on the movement alphabet and activity agenda for children and adults on the spectrum. We encouraged and trained up parents, teachers and practitioners in the area of developing movement skills and seeing the benefits they reaped for those with autism, their families and communities. Students from our degree programme were and still are, a welcome support to schools, community groups and disability organisations, planning and delivering quality programmes. In 2013, we held the first Fundamental Movement Skill conference in Ireland to get the greater message out there. The Health Action Zone workers commissioned me to write two books in preparation for the conference, one for parents and the other for practitioners addressing the development of physical activity programmes in the world of autism. When we reached 1500 reprints of each, we knew the message was getting out there. In 2014, I received the President’s Award for this collaborative work. Throughout 2015, I began to explore how we could use the digital era to further get our programme of addressing movement skills for individuals with autism out there. I came across the work of Professor William Bosl in the University of San Francisco, who had researched the whole area of digital health and autism and as the yanks would say, I reached out to his expertise. However at this time, Tomás was beginning to show signs of more persistent episodes of “catatonia” and he would literally “freeze” mid activity. I knew the opportunity to connect with Bill and his knowledge would certainly help in all of these areas. Again with P.J’s encouragement, I applied for and was awarded a Fulbright Scholarship. It was particularly humbling for me to join the very prestigious line up of Fulbright Scholars, which indeed included P.J. himself. In the summer of 2015, Tomas, my friend’s daughter Rachel and I headed for San Francisco. We had the time of our lives. Beach, forest and trail runs were the order of the day as we discovered the absolute joys that California had to offer. Luckily, for us many of my relatives were living in the Bay area and we had lots of support, love, quality inclusion and care for the duration. My work with Bill and Professor Kevin Oh, his colleague in Special Education evolved. We returned in September of 2015 and I ran the first trial of the programme with parents, teachers, key workers and occupational therapists in the Munster area. The feedback was overwhelmingly positive. However, Tomas’s catatonia had become more severe and this had to take priority. I undertook to find expertise in this field and once again reached out to my colleagues in the U.S. I was connected with an amazing cohort of medical experts all wanting to help. Here in Ireland, Professor Michael Fitzgerald, officially diagnosed Tomas with autism related catatonia in November 2015. Medications were trialled, deemed unworkable and more reconsidered. It proved a very difficult time for Tomas and me as we searched endlessly for an answer to this devastating condition. We evolved through 2016, with little respite from the pressure, with Tomás being admitted to hospital in August. By September of that year, I too was hospitalised with exhaustion. However, not before finding and making contact with an international expert in the area of autism related catatonia, a woman called Professor Amitta Shah. Amitta had worked and studied with those champions of autism including Professors Lorna Wing and Uta Frith. She promised to schedule a visit to Ireland as soon as was feasible. I began the slow road to recovery and resolved inwardly that Tomas and I would once again, shine and grow as a team. I returned to work and reconnected with my Fulbright work at the beginning of 2017. June of this year came and Amitta arrived in West Clare, to investigate Tomas’s situation. She recommended a non-medical intervention programme that we are now delivering. This involves intensive 1:1 prompting to break the cycles of catatonia as they occur. Slowly but surely, Tomás is re-emerging. Meanwhile, I was working on refining and adapting my online programme. P.J.my mentor took a turn for the worst and unexpectedly deteriorated and died in July. I was devastated but knew there was only one way to go. I owed it to myself, Tomas, P.J and the greater population with autism to continue to get the message out there. My work got a major boost when I was offered one of the very coveted places to join an amazing team of Social entrepreneurs in the Social Entrepreneur Ireland Academy Mentee summer programme. This refocussed and energised me to drive on the work we started out with and get it out there to the population that would most benefit from it. The first phase of the “GetAutismActive” online programme has now been completed. It is currently being tested with children and adults with autism in schools and communities. Findings in relation to changes in the movement skills of participants will be circulated over the next number of months. Earlier this year, I was awarded a book deal to write the textbook “Autism and Fundamental Movement Skills: A Guide to Good Practice”. This should be at the publishers and ready for circulation in 2018. The first Irish “Autism and Movement” Conference will be held in Cork in December also. This is being sponsored by The Mardyke Arena, Health Action Zone and The Cork Sports Partnership. Here we will launch “GetAutismActive” the online programme. This conference will give parents and practitioners an opportunity to learn first-hand about the programme and how to implement it. These are developments, I am immensely proud of, as a mother, an advocate and a researcher. Equally, each day brings improvements in both Tomas’s and my own health and wellbeing. We are now managing 10km tethered runs together; yes, we each hold the end of a skipping rope, carry a light weight in our free hand and encourage each other to stay moving. To date despite the challenges presented to us, we as a family team and autism advocates drive on: we truly believe that “ar scáth a chéile a mhaireann na daoine”.