Colette Kelleher (Independent) | Oireachtas source

I welcome and support the Autism Spectrum Disorder Bill 2017 and commend Senator Reilly on bringing it forward. It is heartening to see so many people with autism, together with their families and supporters, in the House to urge us on.

As has been mentioned, a growing number of people are diagnosed as experiencing autism each year. The latest estimates of the Cambridge University autism research centre indicate that one in 58 children have some form of autism spectrum disorder. As Senator Reilly suggests, agreement on realistic prevalence rates of autism in Ireland, along with a standardised a national assessment process such as that envisaged by the Bill, would allow us to plan for the support of people with autism as a standard practice and policy. That is not happening now.

When I worked for the Cope Foundation, its north Lee autism spectrum disorder service was cited as a model of good practice in a HSE service improvement team report published in 2015. The north Lee ASD caseload grew from approximately 50 children in 2005 to more than 500 children in 2015. Instead of a commensurate expansion in resources from the State to cater for the increased caseload, the service experienced cutbacks. In an effort to reduce the cruel waiting times, an innovative smart assessment approach was developed which cut out duplicate reporting by the different disciplines involved. The length of time for the assessment dropped from 24 hours to 12 hours. This streamlined the assessment process and put the focus on the more important post-assessment support that people with autism need across their lifetimes to flourish.

Responding to the needs of people with autism requires lifetime and life cycle planning and a response involving all of society. The lifetime planning approach has been absent from the planning for the education of children with autism. Getting a suitable school place in primary, transitioning from primary to secondary and from secondary to training is disjointed to say the least. The mainstream population would not accept it. Why is this lack of planning and joined-up thinking visited upon children with autism, who prize certainty and often find change difficult? It creates huge, unnecessary anxiety and untold distress to them and their families.

Children and students with autism should be able to access a diverse and suitable education in a mainstream setting. The Education for Persons with Special Educational Needs Act 2004 provides that children are to be educated in an inclusive setting unless this would not be in the best interests of the child. The provision of ASD classrooms which enable people with autism to navigate school successfully are key to making mainstream education accessible. These classrooms have specially trained staff and specialist equipment which helps students with communication, sensory and motor issues.Allowing students with autism to attend mainstream education has a positive effect on the whole school, providing all students with an insight into and understanding of autism. The world is a diverse place, and our classrooms and schools should reflect that reality.

There is currently a chronic lack of ASD classrooms particularly at second level. At present schools can and often do refuse to establish an ASD classroom when requested to do so by the SENOs working for the National Council for Special Education. This results in patchy and unbalanced access to education. Some students, even in urban areas, have to travel up to 20 km to school each day because local schools simply refuse to cater for them. Many students who had access to an ASD classroom at primary school will not get one at second level because of the current gap in provision. The National Council for Special Education has expressed disappointment at the restrictive and exclusionary practices of some schools and has looked for additional powers.

In 2014 there were 13,873 students with autism in the school system, 63% of whom were in mainstream classrooms, 23% were in a special class and 14% were at a special school.

In the whole of County Cork there are 81 ASD classrooms at primary level catering for 480 students and just 41 at second level for 246 students. The Cork autism gap, the difference in places at primary and secondary in Cork, is 234 and this gap is replicated across the country. As a result some students will lose supports as they transition from primary to secondary. Others whose support needs develop at a later stage are being denied access. The need is greatest in co-ed or boys' schools as up to 80% of people with autism are male. A place in an ASD classroom can be more cost-effective than a place in a special school or supporting home schooling.

As well as introducing this Bill, I would be grateful if Senator Reilly and his Fine Gael colleagues would also lobby their other Fine Gael colleague, the Minister, Deputy Bruton, to support the amendment I proposed to the Education (Admission to Schools) Bill currently going through the Dáil, to give powers to the National Council for Special Education to instruct schools to open an ASD classroom, thus enabling children with autism to progress with their education, especially from primary to second level, without fear or anxiety, just like other children.

Also on education, there are significant issues for young people with autism or school-leavers as the group is often known. For example, in Scoil Ashlinn, a school for children with autism in Cork, two young people graduated in 2013 and ten in 2014. Despite no earmarked funding for school leavers Cope Foundation, somehow found a way to set up An Tuath Nua, a training centre offering a three-year training programme. This summer those ten young people finish the three-year training programme. I am not sure what prospects lie ahead for them or what resources are at their disposal. Most likely the ten young people and their families will not know either. This happens year-in year-out for school-leavers, including children with autism. It is simply not good enough and I welcome that Senator Reilly’s Bill seeks to address this and other issues facing people with autism.

The proposed strategy set out in the Bill is comprehensive. Autism is a big spectrum. We need to keep focus on the person with autism, their individual rights and preferences. When one has met one person with autism, one has met one person with autism.

We must avoid the mistakes of the past that were made with people with intellectual disabilities which we are currently trying to undo and unwind. People with autism can often be the ones labelled as having behaviours that challenge. All too often we witness cases of over-medication and use of medical restraints, when it fact it is the environment and not the person that is at fault.

I commend the work of Dr. David Pitonyak, a leading US thinker on autism and one I have had the privilege of listening to and working with. He says that his practice is based on a simple idea that difficult behaviours result from unmet needs. In a sense difficult behaviours are messages which can tell us important things about the person and the quality of his or her life. People with difficult behaviours are often missing meaningful relationships; a sense of safety and well-being; things to look forward to; and a sense of value and self-worth. Dr. David Pitonyak would endorse this Bill, and judge it as being on the right side of history, moving firmly away from segregationist and institutionalised responses, to a rights-based approach to people with autism.

It is important to focus on people throughout their whole lifetimes. The Bill envisages employment being key. I was really glad to read an article in the most recent edition of the Harvard Business Reviewwhich highlighted that many people with autism, dyspraxia and dyslexia have extraordinary skills including in pattern recognition, memory and maths. However, many traditional recruitment methods miss out. It is great to see companies like Hewlett Packard embrace neuro-diversity as an explicit workplace strategy.

I welcome the Bill and will help the Senator and Minister in any way I can. I am delighted to support it.