Dr. Susan Crawford:

I thank the Chairman and committee members for the invitation to address them here today. I call this a reflective case study. I have listened to some of the presentations prior to the break and I think they capture so much of the similarities of the journeys that we all have. I come with both personal and professional experiences and expertise in what is an ever-expanding field of autism. Equally, prior to addressing the committee, I reached out to autistic people, parents and professionals in education, health and disability disciplines, to garner what they view as the priority areas to explore with the committee. Hence, my address reflects this valued input.

My journey in the world of autism began somewhat unexpectedly back in 1998, when my only child, Tomás, was diagnosed as autistic at the age of two. I was, to say the least, a maverick to autism. I had trained and worked in both nursing, midwifery and sports injury therapy and at the time I was completing a BSc degree in sport and exercise science at the University of Limerick, as a mature student. I took time out and set about educating myself in the field. It was a quagmire to negotiate. At that time, we had only disjointed and sample services in Ireland. I reached out internationally to experts who directed me, accordingly, to what was then best practice in autistic education, health and well-being. I travelled globally, completing courses as they arose. Also, at that time I was fortunate to connect with parents on the same journey and a sharing of resources began. Together with three mothers, I set up the first autism support group in County Clare. We actively fundraised and brought experts from around the world to County Clare to get parental education off the ground. Meanwhile, at home, Tomás's trajectory was becoming more obvious. He was a night runner, so rather than fighting the darkness, I got up and ran with him. From early on, I learned the benefits of taking his lead. It was to prove a lifesaver.

I returned to my studies and, with the support of my lecturers, I completed my degree and secured an Irish Research Council scholarship to do my PhD. My study was the first to examine the development and delivery of movement programmes for students with disabilities in Irish schools and to further research the effects of such an intervention programme on the skills of autistic children. It was the first study of its kind in Ireland and the findings did not surprise. Then as now, teachers were clearly highlighting that they had neither the skills, equipment, supports nor time to develop or deliver programmes to autistic children, especially movement programmes. Equally, the study showed that with intervention, students' skills not only in movement but also socially and emotionally, improved. Our lives evolved at home. Tomás was in need of a primary education provision. With the support of the principal in the local school, I researched, wrote and delivered our proposal for an autism-specific class to the Department of education, informed by international best practice. We got approval and the class took off. This was the first autism-specific class in a mainstream school in this country.

We had sought and secured in-class support for a visiting speech and language therapist, a visiting occupational therapist, a sport and exercise scientist, a psychologist to oversee the service, SNAs for each of the children and external review from Professors Rita Jordan and David Sugden, who had significant expertise in the field. Within the year, there was a waiting list and again with active funding and the approval of the Department of Education, the autism unit was built. This has now evolved to accommodate 12 students. Staff associated with that service were actively encouraged to develop their knowledge and expertise with Professors Jordan and Sugden and many others and in-house workshops were the order of the day. However, what was clearly identified and needed back at the outset in 2001 is as much a requirement today. Clearly, current provision does not reflect this need.

Our lives evolved. Tomás was further diagnosed with learning disability and a speech and language disorder and he moved to St Clare’s Special School for his ongoing education. I completed my PhD and joined the staff at UCC as a lecturer and researcher in the School of Education. During this time, I quickly established valued links in community. My students and I evolved to gain hands-on experience developing, delivering and promoting quality movement programmes for autistic participants, from preschoolers to old age. It was to have a profound effect on all of us involved. Autistic children and adults, and indeed those with additional conditions and diagnoses thrived with hands-on, appropriate and evidence-based interventions that addressed frequency, intensity and duration of meaningful practice from trained personnel. I received the President’s Award for this work. Tomás was further diagnosed with epilepsy and catatonia of autism. Epilepsy now affects 30% of the autistic population and catatonia of autism affects 18% of the autistic population. I was fortunate to have been awarded a Fulbright scholarship in 2015. Tomás and I travelled to San Francisco to work with experts in the field, developing my own Get Autism Active online programme. While there, expertise in the field of autism and health helped us source the appropriate expertise for catatonia. We returned home and brought two teams of catatonia experts to Ireland to work with medical and social care teams here to establish clear evidence-based protocols in its management. That is currently ongoing.

I left the post in UCC in 2018 and set up my own consultancy in the area of autism education and training with specific emphasis on the importance of developing quality movement skills. As evidenced by my own work and that of others in the field, movement breaks are an integral part of each day for all on the spectrum for health, education and quality of life gains. In 2019, Tomás and I ran and walked the Wild Atlantic Way from Kinsale to Free Derry Corner on an "Autism Active-Autism Aware" agenda over 88 days. We met many parents, professionals, passers-by and members of the public who sympathised, empathised and learned first-hand with us of autism and the power of movement. Since then we have rolled out training to parents, professionals, libraries, and local community groups including businesses, sports partnerships and teacher education centres to mention but a few. Here in Clare, organisations have evolved their service provision to include video vignettes of their services on social media and websites, sensory spaces and sensory kits, communication boards and autism aware understanding and acceptance training and certification.

In summary, from our case study and the voices of our fellow stakeholders the issues are still appropriate access to early diagnosis, intervention and support, the earlier the better and the greater the chance of success and development although it is never too late to intervene; appropriate education and training for all parents and professionals. I speak quite a lot to educators and healthcare professionals and, time and again, they highlight clearly their own lack of training in the world of autism, their lack of awareness and understanding of autism and the greater issues and needs associated with diagnosis. A further issue is access to appropriate education and service provision across the lifespan. It does not start or stop with school-age children. We see preschoolers being identified as presenting as autistic. Surely we can identify up the line, if learning disability comes in at the age of four and something else comes in at the age of six, they are going to be in a service on an ongoing basis. These issues need to be addressed across the lifespan. Also needed is appropriate access to multidisciplinary professionals and services. I heard many people speak earlier about the need for occupational therapy, speech and language therapy, psychology and so on. All of these people need to be working together. It has to be multidisciplinary. As to where or how it is provided, I feel the educational setting is the place. Back in the day when I set up the first unit it worked really well. It showed a successful model of practice. Respite provision and summer support services need to be addressed. Clearly, if we address respite provision appropriately, parents, carers and others will maintain people in community in their own homes. Equally, if the summer support service is developed and addressed properly it too can have significant positive impact on the health, wellbeing and education of children and adults who are autistic. An interdepartmental “top down-bottom up” mindset change is needed. I understand the committee was addressed by the HSE last week. In my personal and professional experience there is no joined-up thinking whatsoever in the HSE. That is a massive issue from start to finish. This really has to be addressed from the bottom up but also from the top down. Finally, when I see what we have achieved in County Clare and in different pockets around community and educational settings, I see no reason we cannot lead from the front as a country. We should be making ourselves the autism hub of Europe. We can be a model of research, policy and best practice if the will, commitment and energy are there to do so. I look forward to the committee members' questions and thank them for their time.