Joint Committee on Autism díospóireacht -
Tuesday, 31 Jan 2023

Autism Policy: Discussion (Resumed)

Chairman

We have a quorum. Apologies have been received from Senators Wall and Garvey. The Dáil Business Committee has agreed to the joint committee's request for a Dáil debate on its report on the summer programme. This will take place on Thursday, 2 February at 6.16 p.m. and will have a two-hour slot. We are waiting for details of our debate in the Seanad.

Today's business will involve two sessions. Session A will run from now until roughly 12.10 p.m., and we will meet with representatives from Science Foundation Ireland. We will then take a short break. Session B will run until 2 p.m., and we will meet with representatives from the Middletown Centre for Autism. At the request of the Working Group of Committee Cathaoirligh, we will endeavour to finish the meeting at 2 p.m. I propose that the following usual arrangements will apply. Our witnesses will make their statements for around five minutes, or three minutes each in the case of Dr. Lopez and Dr. Healy. We will then have questions and answers with members. Each member will have five minutes and members may speak more than once should we have sufficient time. We will work off the list of speakers which was circulated during our Teams meeting.

All those present in the committee room are asked to exercise personal responsibility to protect themselves and others from the risk of contracting Covid-19.

I remind members of the constitutional requirement that they must be physically present within the confines of the place where Parliament has chosen to sit, namely, Leinster House, in order to participate in public meetings. I will not permit a member to participate where he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the parliamentary precincts will be asked to leave.

For the information of witnesses, I wish to explain some limitations to parliamentary privilege and the practice of the Oireachtas as regards references they may make to other persons in their evidence. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected, pursuant to the Constitution and statute, by absolute privilege. Witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of that person or entity. Therefore, if witnesses' statements are potentially defamatory of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

The first item on our agenda is our consideration of autism policy. I welcome our witnesses. From Science Foundation Ireland, we are joined by: Dr. Ciarán Seoighe, deputy director general; Dr. Lorna Lopez, associate professor at Maynooth University and principal investigator of the family genomics research group; and Dr. Olive Healy, associate professor in applied behavioural analysis in the school of psychology, Trinity College Dublin. The committee is interested to hear from Science Foundation Ireland about Creating our Future, a forum that asks members of the public to suggest topics for research that could benefit the country. A number of the submissions touch on areas that are relevant to the lives of autistic people such as health, social care, inclusion and more. This platform gave the opportunity to the public to make their voices heard and to participate in a forum that will hopefully lead to improvements in society. This is something that we as a committee hope to achieve with the report we will be publishing at the end of March.

Before we hear from Dr. Seoighe, I propose that we publish his opening statement on the committee's website. Is that agreed? Agreed. I invite Dr. Seoighe to make his opening statement on behalf of Science Foundation Ireland. He will have five minutes and then Dr. Lopez and Dr. Healy will have three minutes each.

Dr. Ciarán Seoighe

I am grateful for the introduction. I thank the committee for inviting us here to speak about Creating our Future. It is a great opportunity to talk to the committee about it. Creating our Future is a campaign about which many of us in Science Foundation Ireland are particularly passionate. I am very proud of it. I will talk about the campaign itself, how it was run and how we engaged with the public. Then I will talk about some of the findings and what we want to do with it next. I am not an expert in autism. I am joined by colleagues, Dr. Healy and Dr. Lopez, who are much more au fait with autism than I am. I am acutely conscious that in that regard, I am probably the least interesting person in the room. However, I am very happy to talk about Creating our Future, the campaign and how it ran. The campaign was a Government of Ireland campaign. The intent was to engage in a very inclusive dialogue with the public to understand what the public wanted researchers to look into to create a better future for everyone. It was inspired by work done internationally, notably in Netherlands and Flanders, where they have done similar campaigns to engage their public to ask them what researchers should be looking at. Engaged research is generally a trend internationally and has become more and more important.

One of the things that was really important for us in the campaign was that we had a north star. Our north star was that we would have an inclusive dialogue. I want to talk about those two things in particular. The dialogue part meant this was not a survey. It was not simply us going out to the public and asking people to give us ideas. We really wanted to spark conversations between researchers and the public. That is really where the nexus of this thing comes from. By engaging in that dialogue, we have much more informed submissions from the public. That is really what we were trying to achieve. It is not easy to achieve. It is easy enough to get to the people we talk to on a regular basis within the academic community. However, the second part, which relates to inclusivity and getting to a much broader cohort, was much more challenging.

This was an initiative led by the Department of Further and Higher Education, Research, Innovation and Science. It was operationalised by Science Foundation Ireland. The main thing we realised early on was that no single agency or Department really has the breadth and reach that we need if we want to be truly inclusive in a dialogue of this nature. We established an advisory forum made up of Departments, agencies and a broad range of community, societal and enterprise groups and interest groups who could really bring the knowledge and insights to make sure we were as inclusive and accessible as we could be but also to help extend our reach. Very early on we saw that engaging in this much wider advisory forum led to a tenfold increase in the social media engagement and reach we would normally have as Science Foundation Ireland. That meant we could get to a much broader cohort of individuals across the country.

We made a point of having roadshows. We travelled to every county and set ourselves up in town halls, scouts dens, community centres, universities, shopping centres. We went to schools and a range of different locations where people were. We brought researchers to people in every county to have conversations about research, what was important to them. Learning from our colleagues internationally, we benchmarked and expected something in the region of 10,500 submissions.

In fact we hoped for slightly more because we are slightly competitive by nature. When the campaign, which comprised roadshows and carrying out brainstorms throughout the country, was finished, we had more than 18,000 submissions. This is a staggering number, far greater than we anticipated, especially given that the campaign was undertaken during the pandemic and had to be done digitally. It showed the degree to which the public engaged with this campaign. There are people who need to be called out, aside from all the different members of the advisory forum groups who came together, as it was the leads and the chairs who pulled this together. They include Julie Byrne of Nokia Bell Labs, who led on the campaigns of the advisory forum and made sure we got to every county and got to an inclusive dialogue.

As we then had 18,000 submissions that had to be analysed, we pulled in a cohort of some 70 or 80 volunteers, experts and academics, who worked together to analyse all the submissions we got, which far exceeded the number we anticipated. Many people worked over Christmas to do the analysis. We looked at it through three lenses. Every submission was read by an expert. We also did an artificial intelligence review to look at it from a linguistic perspective. We then looked at it through a human-centric lens to glean what people were telling us about their lived experience at that time.

We broke down the submissions into 16 thematic areas. Within those 16 thematic areas we had a range of different submissions. The database is available for anybody to see, trawl and review. Notably for this group, we had approximately 100 submissions related to autism. We can talk about some of those as we go through the questions. I will take members through some of the examples. Much of it was around policy and policymaking, and there was also a very personal element on what this means to people. Some of it was around areas of research on which researchers should focus.

What happens next is we need to have these conversations in this kind of environment and with our academic communities because these need to form a book of inspiration for researchers in order that they can look at these ideas and see what is of importance and interest to the public. That might direct more of their engaged research.

Dr. Lorna Lopez

In regard to engaged research, autism is a neurodevelopmental condition. It is multifactorial. We know that genetics has a significant role. Research discoveries to date have identified genetic causes of autism of up to 20% of cases. Ongoing research, using a technique called whole genome sequencing will continue to identify more genetic causes. This is one focus of my family genomics research. This has real significance for patients at the moment. Children can be screened for genetic variants and given genetic diagnosis in clinic. Genetic diagnosis offers an explanation and more understanding for families about their child’s condition. There are of course still gaps in our knowledge. Many researchers are working hard to understand what these genetic changes mean, especially over the longer term, for prognosis.

Genetics research has also led to more understanding about the condition, such as sleep disturbances. This is another key focus of my FamilySleeps research. There are international research efforts to look at the interdependent roles of sleep and our biological and circadian rhythm disruptions in the development of symptoms.

A third opportunity for research is in the area of new drug discovery and clinical trials. Huge efforts are ongoing globally to try to find new drug therapies for autism and other neurodevelopmental conditions. Clinical trials are ongoing. The European AIMS-2-TRIALS consortium was established to identify biomarkers for precision medicine and to set up a European infrastructure for clinical trials. As part of AIMS-2-TRIALS the Eager Project has been set up, which is an autism and neurodevelopmental condition registry that will help to identify autistic people to participate in clinical trials as new drugs are discovered.

The voices of autistic people are represented in this research. There is not always agreement but there is healthy dialogue. At a European level for example, AIMS-2-TRIALS has an active engagement group of autism representatives. In Ireland, PPI Ignite drives excellence in this space and provides education and support to researchers including my research group which has a public and patient involvement, PPI, panel as well.

This kind of research can be slow and expensive. However it is important and this support is crucial to involving the autism community in the formation of research agendas, research priorities within an engaged research framework. To realise the benefits of autism research, we need greater integration of research and clinical care. This is urgent in the age of precision medicine, which is focused on the right treatment for the right person at the right time. Over the course of my career, my work have greatly benefited from close alignment of the clinician, clinical researchers with transdisciplinary technical experts, including lived experience experts, with significant support from Irish and European funding agencies. Our next challenge as researchers is to ensure that our autism genomics research creates a future for autistic people and their families within a research-led learning healthcare system and to take advantage of new opportunities such as our new national strategy for accelerating genetic and genomic medicine in Ireland, and to do this while ensuring the voice of the public is heard.

Dr. Olive Healy

I will provide a brief overview of my research, the primary aims of which are to address individual, family and societal challenges that are experienced by autistic people and their families, echoing some of the many submissions made to Creating our Future. The theme that emerges involves science communication whereby knowledge and effective solutions from research are made more understandable and accessible for uptake and use. I am committed to actionable research, engaging with the public and involving families to improve certain person-centred and socially important outcomes.

A research-to-practice gap exists in health and education in Ireland in regard to strategies for autistic people to ensure that living a fruitful and satisfying life is a given. Embracing these solutions is a welcome development to inform what will work for real lives. While my research streams cover a wide variety of topics, all have an overarching focus on promoting self-determination, empowerment and enabling greater choices. My research team examines for example telecoaching parents of toddlers waiting for an autism assessment and provision in very early behavioural intervention in order to give children the best start. We are investigating differential persistence of primary reflexes for autistic children as a novel precursor or biomarker in order to identify those who would benefit from supports and to provide these critically important supports at the earliest possible age. We have developed assistive technology platforms to support the dissemination of effective and empirically supported practices to address the issues that arise for many autistic people in particular related to stress and anxiety. Together with my colleague, Dr. Rhona Dempsey, we have founded Interact, Accomplish and Thrive, funded by Enterprise Ireland and Science Foundation Ireland within the world leading ADAPT Centre at Trinity College Dublin. This technology aims to empower individuals and families by putting currently distant solutions online and in their hands. We are also designing and disseminating evidence-based practices and prevention protocols for the emergence or escalation of distressed behaviours that often limit an autistic person’s life experiences and happiness. We are empowering educators, parents and autistic individuals with highly effective strategies in order to meet communication and developmental needs. Literacy is a lifelong essential skill which is critical for all children. In order to enable and expand their learning and learning opportunities, we are focused on high-quality instructional reading strategies that improve outcomes for autistic children who can be under-served in terms of achieving literacy. Our overall research goals are to build skills, minimise barriers and optimise person-environment fit for supports.

Deputy Pat Buckley

I thank our guests. I do not know how they got so much information into just 88 pages of the expert committee report, Creating Our Future. The level of engagement during Covid-19 was unbelievable. The topics are mind-blowing, from diagnosing younger children with autism to certain tests for Traveller women who wish to breastfeed, right across the spectrum to green energies.

Regarding inclusivity, I note there were also submissions in English and Irish. I read about the multidisciplinary approach adopted and Dr. Seoighe spoke about how it goes across all sectors in society. The report is easy reading but is a template for how Government should work. Whether it is autism or mental health, they are all tied into each other. This report seems to go across the whole lot, from social deficiencies, where you live and what actually affects you. One part of the report even addresses the question of mental health in families with autism and what their concerns are. There is an advantage or disadvantage to where you live. To synopsise, I recommend that anybody read it, but there were a lot of red flags for me, albeit they are not bad red flags. There are people I have worked with over the years and I am going to tell them that if there is one report to read - other than the committee's report, which will be launched on Thursday evening - it is this one because it is a brilliant example of joined-up thinking. It has been a while since I have seen joined-up thinking with every stakeholder being engaged and not making it over-complicated, with one or two sentences. I think 89 words was the longest sentence in the whole lot. I congratulate Science Foundation Ireland on the report and apologise because I have to go due to another engagement. I hope to be back in. It has been a pleasure. That report needs to get out into the public domain because it has such a broad spectrum, covering every colour, class, creed, religion and no politics. It is a breath of fresh air.

Chairman

Does anyone wish to comment?

Dr. Ciarán Seoighe

I thank the Deputy for his comments, which are very much appreciated. I echo much of what the Deputy said. We want to get the report out there further. We promoted it among the academic community because it is an opportunity for them to look at what the public are really concerned with. As somebody who personally attended a number of the roadshows in several different counties, the engagement and dialogue were fantastic. Often members of the public were surprised that they were being asked directly for their opinion. That really shocked people and was seen as a breath of fresh air. They appreciated the opportunity to share their views and thoughts. We had submissions from every part of the country including one from the International Space Station, which we are very proud of. We went out of this world with the campaign.

Deputy Ruairí Ó Murchú

Was it a big submission?

Dr. Ciarán Seoighe

It was through a school submission; there was a good conversation about involving further research in the future. The Deputy also picked up on transdisciplinarity, which is important. It is a trend. There was a time when things were done in isolation, even in the research world; that has changed. We have gone from disciplines, to multidisciplinarity, to transdisciplinarity, where disciplines that are very far apart are now working together in new ways. That comes across in the campaign and the way people have engaged. There was also a human element to the campaign. When you talk to people, there is a lot of focus on health, particularly mental health. We had conversations with younger people who were worried about the mental health of older people and the impact of Covid-19. Older people were actually worried about the mental health of younger people, so there was a real human element of what people are concerned and worry about in these conversations. I thank the Deputy for reading the report and for giving it such an endorsement. I hope we can get it out as broadly as we can.

Deputy Pat Buckley

I do not need to be praised, I did not do any work on this, I only read it. Science Foundation Ireland gets the credit.

Dr. Olive Healy

I thank the Deputy for his comment. It is wonderful, as a researcher, to have a public voice to listen to and tell us how we need to direct our research goals and the themes of our research. In reading submissions from the public, it was great to see that some of our work mirrors what they are requesting and advising us to focus on. It also gives us new ideas for where our research needs to go. Our research should impact the public and we should be using the fruits of our research to improve the lives of the people we are trying to serve.

Chairman

Deputy Pádraig O'Sullivan, who is joining us online, does not appear to be available. We will come back to him. I call Deputy Tully.

Deputy Pauline Tully

I wish everyone a good morning. All research is welcome. A broad range of issues was researched on which people were engaged. As the Committee on Autism, we are interested in the findings from autistic people who engaged in the process. As a committee, we are tasked with coming up with a report and recommendations in a few months. Does Science Foundation Ireland have any advice for the committee? It would be very welcome to hear about the information received from autistic people. Dr. Lopez mentioned causes and genetic causes; about 20% of autistic people have autism linked with genetic causes. Is that 20% and 80%, or is it that enough research has not been done? It was a surprise to me because while the prevalence of autism is much higher, is that because we were not aware of autistic people and disabled people in general in the past? It is not that autism is a disability, it is a different ability. They were often boxed in, sometimes labelled with not very nice terms and often institutionalised over the years. Is it just that there is better awareness now or has there been an actual increase in autism in recent years, based on Science Foundation Ireland's research?

The witnesses also spoke about their research in drug therapies and undergoing clinical trials. Exactly what would the drugs be treating? There is a place for drugs in treating, for example, mental health issues, but sometimes there is an over-reliance on drugs to treat people with mental health issues and not enough on other therapies like, in the case of autism, speech and language or occupational therapy. I am a little concerned. Will Science Foundation Ireland clarify genetic testing and drug therapies?

Dr. Lorna Lopez

I thank the Deputy for her questions. I will go through them. The first point was about the importance of the autistic voice in all the research, as the Deputy mentioned at the very start, and the importance of engaged research. The Deputy also spoke about the report the committee has to write. That is my key message, namely, the importance of the autistic community and their voice in research and in engaged research. It is not just about us, as researchers, listening, but for them to be taking part in the research, from setting the research priorities all the way through the engaged research life cycle, to undertaking research and disseminating the research. The autistic community must be involved in the whole process of research; that is important and a key aspect.

Regarding genetic causes, the Deputy mentioned the 20% figure. We are discovering more and more genetic variants and genetic explanations for autism. We know much more than we did five years ago. It is down to the international collaborative effort and the technology. International researchers are coming together and making discoveries and the technology has enabled us to look much more at our genomes and to understand that within the family context. Regarding more diagnoses, diagnoses have increased fourfold over the last 20 years. Research shows that the majority of that is because of diagnostic expansion. We are much more aware of the diagnoses. On drugs, I highlighted a European consortium. One of theirs is arbaclofen, which works on social interaction, which is in development. A European consortium is involved in that.

The consortium's research element has engaged A-Reps, an autism representative group. It is involved in every step of the research process and its members' voices are listened to in the research.

Dr. Ciarán Seoighe

The Deputy's first question was on general recommendations. I have learned something in the course of this work. I read the submissions to Creating Our Future and I read through what people said was important. By having a conversation with research colleagues who are much more versed in what this means, I have found there is an opportunity for a deeper interpretation of what the recommendations could mean. Colleagues have the experiences and anecdotes that can bring the next level of depth. A general recommendation is to consider what the public, including autistic people, tell us and then connect with researchers to help bring a deeper understanding and, sometimes, translation of that information. I found this valuable, as it was a way of getting deeper into what the recommendations meant.

Deputy Pauline Tully

I thank the witnesses.

Deputy Ruairí Ó Murchú

Politicians are great at talking about the need to deal with stakeholders. SFI did that. That there were 18,000 submissions is impressive. Reference has been made to the importance of inclusivity and how it is an easy word to use. The difficulty in that regard has also been mentioned, that being, making this world much easier to traverse for autistic people and others who are experiencing difficulties. There can be obstacles as well as moments that are very distressing for them.

SFI dealt with everything from Government agencies to NGOs, covering anyone who wanted to engage. That was vital. The witnesses stated that a significant amount of the research was being done in the right field, but what did SFI learn about the research it had not carried out and that it is now considering on the basis of this engagement?

Dr. Ciarán Seoighe

I will start by giving a contextual perspective, after which my colleagues can take over. What we have heard is the public's interest. Where people have expressed an interest in something related to autism, we can trawl through the questions for it. Many of the submissions were policy related - not so much about research, but about where we can make lives better, for example, making the education system more inclusive, more training for teachers, GPs and gardaí, and increasing awareness. They were also about making it easier for people who were autistic to contribute and be included. What came across in the submissions was that many of them were deeply personal and drew from people's lived experiences. These submissions represented a large cohort of what we received. There were suggestions relating to researching different areas that may or may not have been related to autism. The researchers can examine those and see whether they are areas they are not considering right now. All of our research colleagues have access to those suggestions and can read them to see whether there is anything they have missed. The vast majority of the submissions had to do with supports, education, care, diagnoses and including autistic people.

Deputy Ruairí Ó Murchú

In fairness, I did not put enough emphasis on that at the outset. Much of this work looks at ways of introducing inclusivity. There are two elements. First, a lot would work better if we had a greater level of understanding. We could probably say that there has been a general understanding in recent years. Second, we could give people strategies for making situations easier. It is not always perfect and we constantly find anomalies. We are getting to a better place, but we are taking a circuitous route to it. It is a twin-track approach.

When the witnesses speak about research, they are not only referring to research on how understanding means improvement but also to research on precision medicines and so on. I will ask a question on that, but what is important is that SFI did this work and asked those questions.

Dr. Olive Healy

There are two facets that need to be considered when we think about inclusion and improving awareness of autistic people's needs across society. The first is making sectors of society more aware of what can be done, upskilling members of society in understanding strategies, changing environments, and creating environments that are more autism friendly and open to being successful in terms of autistic people participating in them. The second facet involves giving autistic people skills and support in preparing them to integrate better and be able to access areas of society where barriers exist currently. For example, we have the behaviour support in dentistry, or BeSiDe, network in Trinity College. It is a marriage of research between psychologists and dental health professionals and involves the Dublin Dental University Hospital. We work with dental health professionals on how best they can use strategies that are effective in improving participation in oral health. There is a recommendation from the Lancet commission on the future of care and clinical research in autism to the effect that all autistic people should at least have access to one oral healthcare check every year. For many, that does not happen.

Putting into professionals' hands strategies and skills they can utilise to improve participation is a matter that arose in the messages we saw. Research can drive this forward. Those strategies must also be put in the hands of the stakeholders – autistic people and their families – themselves. Leveraging technology to do that is vital so that these supports can be made available through technological platforms, for example, mobile apps. We have seen some good success with this approach, but more research needs to be done to examine how effective it can be and what its outcomes are.

Deputy Ruairí Ó Murchú

There is a huge amount in that regard. Putting supports in place for people that allow them to be all they can be, to use a terrible term, is the framework the committee generally deals with.

There are two parts to this: putting in place strategies that work with professionals and others who interact with various cohorts, including autistic people; and providing particular skill sets or mitigation strategies to autistic people themselves. The latter goes without saying. If we could do all of that tomorrow, we would live in a much better world. That is why this research and, beyond it, pilot programmes and, eventually, initiatives that work across society make complete sense.

Did Dr. Lopez say genetic causes accounted for 20%? She referred to genomic sequencing work that was being done. What has that shown? If genetics only account for 20%, what accounts for the rest? Deputy Tully asked a question about something we were all wondering about. Can Dr. Lopez say conclusively that we have not had an increase in the percentage of autistic people and that the current numbers are just down to diagnoses that were not being made previously?

Dr. Lorna Lopez

Let me clarify. No, it is certainly not the case. I was referring to a large US study that showed a 30% increase over the past four decades. The study's conclusion was that the majority of that increase was due to diagnostic expansion. There are many other aspects to it, of course. The first comment I made in my opening statement was that autism was a multifactorial condition. Genetics are a part of it and an explanation for some of the causes----

Deputy Ruairí Ó Murchú

Dr. Lopez put a figure of 20% on it.

Dr. Lorna Lopez

Yes. That is correct. In many international research studies where families and children take part in genetic sequencing projects, that is approximately the diagnostic rate where one would get an association of a genetic variation that might explain the cause of autism. In general-----

Deputy Ruairí Ó Murchú

Dr. Lopez is talking about a genetic variation. There is sequencing of parents and whoever else before and something similar is being found, so Dr. Lopez is saying there is an aberration in that sequence.

Dr. Lorna Lopez

We use genome sequencing where there are different types of genetics techniques that can be used. The most recent one I have mentioned is genome sequencing and it is the basis of the new genetic strategy that was published in December. This genome sequencing measures every single genetic-based pair in our genome and DNA. We then look at all of these genetic changes which we can see throughout the family and compare them between individuals within the family, but also what is much more important is to combine it in a much bigger scale so that we can understand. We know from different types of biological research that if there is a change in this particular area of a gene, this can cause downstream consequences. We have just about over 100 genes where we know very reliably that if there is a change in one of these genes, that can be linked to autism.

Deputy Ruairí Ó Murchú

It is a change rather than that a gene comes into play.

Dr. Lorna Lopez

Definitely it is a change in the gene, so that would change the expression of the gene.

Deputy Ruairí Ó Murchú

I understand. It is not like we are looking at the autistic gene per se.

Dr. Lorna Lopez

Certainly not, as there is no gene for autism and it is more just on a cell-----

Deputy Ruairí Ó Murchú

I did not think so and I am not looking for it. I am just making sure I understand what Dr. Lopez is talking about.

Dr. Lorna Lopez

One of the Deputy’s questions was about the importance of the voice in the Creating our Future campaign and whether we learned anything from the Creating our Future submissions. There were a number of these related to genetics and autism and one, for example - I am not sure if the Deputy came across it - talked about where researchers should explore spectrum disorder. If it is okay, I will read it out:

We have 3 children with ASD and they are all so special, loving and misunderstood. We don't want to change anything about them but we would love to know how to adapt our neurotypical world to allow more opportunities in life. Discovering the cause of ASD would help many parents sleep better at night as we always wake up thinking did we do something wrong.

There is another submission from a man from Kerry who is living in the UK and he had read that autism is important with regard to genetics, and he said:

If autism is genetic, and given that Ireland is an island, there is room for a study of autism in the Irish. It will help future generations.

It was very surprising for me that it was a parent from Westmeath and a man in Kerry who responded, where everybody from all over Ireland is very keen, and that there were submissions that supported the research we are doing.

The Deputy asked if we learned anything new. From my point of view, it is the importance of the engaged research and the willingness to take part. Many of the submissions were also about the interest in science and research. In Maynooth University, for example, we have a great deal of outreach activity. Rather than being involved in actual research, there are such activities as getting into the lab and having quiet spaces so that we can engage in those kinds of research activities.

Deputy Ruairí Ó Murchú

It is very good to see the parents were interested because I would have an element of interest in that myself. As I said before, our Turlough, my 14-year-old, is autistic. He had glue ear. We thought it was language delay initially. We then went through the chicken-and-egg processes as to what caused what. You go through a whole pile of reasons and you are then seeing a great deal more cases. You then become far more aware of it and ask why. The research, obviously, is completely necessary.

Research in respect of mitigations across the board will make life easier for him. I am up for whatever works on some level. I am into buying into this, and I will not pretend I have any great understanding of genetic sequencing. I did, once, for a thesis. I had to do some sort of comparators in respect of varying types. I then tried to build an agent architecture to distribute it across a network and carry out genetic sequencing. It worked all right with virtual machines and, when I put it together with networks, I may have had to rig the system to get the result I needed. I can probably say that now because-----

Dr. Lorna Lopez

The Deputy will be recruited to our team.

Deputy Ruairí Ó Murchú

No. Dr. Lopez will be looking for people who will not do what I did. This is very interesting. Dr. Lopez discussed sleep research specifically, and sleep is something I am very interested in myself. When talking about drug therapies, will she elaborate on some of the specifics of the precision medicine and what we are talking about in that regard? It is difficult to get people to sign up for clinical trials for multiple reasons which we can all think of.

Dr. Lorna Lopez

I run a research project called FamilySleeps and it is funded by a European Research Council grant. I have a wonderful team of researchers helping to undertake that research and its goal is to understand the genetic basis of sleep and autism. We know there is a genetic link between sleep and autism because research has shown us there is a link between chronotype, which is our preference for night time or morning time, and autism. We are undertaking this approach and are doing it in a family environment because, of course, families are very important. We will measure sleep and activity over the period of one year because, until now, research has only been undertaken for two weeks, for example. It is very important for us to get an understanding of our biological rhythms and how that relates to sleep and sleep disturbances. That is very problematic and is one of the most common co-occurring condition reported for autism. That is our approach. We are undertaking and have done some pilot work on that which we are launching later this year. We are hoping that will be a very important insight into the biological basis of circadian rhythms within families and within families with autism. That is our sleep research.

So far, as I have said, we have a team of researchers, health and chronobiologists, healthcare professionals, and lived-experience experts. This is very much a transdisciplinary effort and is important because of the need to get a sense of sleeping during the night. We are using non-invasive sensors in the rooms and to measure activity during the day, so it is very much a technology-driven project also, but with the aim of discovering the genetic basis of it.

Deputy Ruairí Ó Murchú

This is similar to what Dr. Lopez said when talking about precision-type action and what works for an individual, which is the best time and the best whatever. It is almost looking for bespoke solutions in respect of these, even of sleep.

Dr. Lorna Lopez

Exactly, because everyone has their own individual sleep behaviour, but that impacts the whole family. It is also impactful, and it is important for us to get an understanding of what that is over the course of a long period, such as a year.

Deputy Ruairí Ó Murchú

Everyone understands the idea of children with their minds racing where they will try anything not go to bed. Autistic children will also do that. Again, that does not upset up anybody if it happens to be a good day the next day. That can be much more severe when dealing with autistic children.

Dr. Lorna Lopez

It is a very significant challenge. That leads in nicely, perhaps, to the Deputy’s second question, which I have not forgotten about. This was in respect of personalised medicine. I mentioned having the right treatment for the right person at the right time. This approach aims towards that. That is the goal in other healthcare systems and it should be the goal for us also, which is to ensure our research informs practice and personalised medicine. It is very much a goal of the national strategy for accelerating genetic and genomic medicine in Ireland, which was launched in December 2022. A key strategy within that is enhancing our genetic and genomic clinical services, strengthening the infrastructure to drive advances in genetics and genomics, which is very important for researchers, and building our genetics and genomics workforce for the future.

Ensuring public and patient involvement and partnerships in the research is also key, as is a co-ordinated and national approach to genetics and genomics. It is a brilliant time to be part of that.

Deputy Ruairí Ó Murchú

I would imagine so.

Chairman

I have a few questions. A common word I came across in our guests' submission was "inclusion". If I were to pick out one theme, it is that autistic people and their families want to be included in society. As Oireachtas Members, we have to put the supports in place to ensure that will happen.

In respect of assisted technology, which Dr. Healy mentioned, what can Science Foundation Ireland do to improve that? Certain technology exists, and there are other methods of helping kids, particularly non-verbal ones. Fiacre Ryan from Mayo, the first non-verbal child to sit the leaving certificate using the rapid prompting method, appeared before the committee. What type of technology is Dr. Healy referring to? What proposals is she thinking about? She also mentioned literary skills and ABA. What are her views in that regard?

Turning to Dr. Seoighe, what is the next phase of the project? Where is it moving to and what specific projects does he see happening in respect of autism?

My final question, on sleep research, is for Dr. Lopez. I am the father of a young boy who is autistic. What has the foundation's pilot work shown ahead of any longer research to be carried out?

Dr. Olive Healy

I will take the first two questions together because they are related. The technology we are building on aims to incorporate evidence-based practices that already exist. There are many solutions for various aspects of the distressed behaviours or the challenges that exist for autistic people. Those solutions, unfortunately, are not widely available, are costly or are too complex for people to learn and implement. Sometimes we see, across professions, education, healthcare or social care and even among families, that they do not know about these evidence-based practices. They may not have been brought to their attention and they may not be aware of them. Sometimes, they are too technical or they are stuck in a journal article that is too difficult to access. This idea of utilising technology within a science implementation framework is very important, and that is where Science Foundation Ireland can help us continue to build on strategies to disseminate these evidence-based practices better in order that they can be utilised by teachers, healthcare professionals and so on.

Empowering parents with these solutions is so important in very early intervention. We often talk about early intervention once diagnosis has been given, but we should provide very early intervention, even while somebody is waiting for a thorough assessment. We have seen from our research that we can make powerful impacts on the developmental trajectory of young children and give their parents skills they can use at home, in the naturalistic setting, out in the community, that are highly effective to improve social and communication and behavioural repertoires. In that way, we can reduce the risk of distressed behaviour, especially when we see it emerging, and ensure it will not escalate.

Chairman

Have any proposals for the use of that technology been submitted to, say, the Department of Education or the Government?

Dr. Olive Healy

We are still developing the technology, and there are many aspects to it. Right now, we are focusing on building video modelling and psychological supports within an app that will allow people to look at environments that might be very stressful for them, know what is going to happen next and have prediction and control. For instance, we are working in air travel to ensure that autistic people are able to take a flight and go somewhere, but we know that is a very stressful environment for many autistic people. We have all these solutions, embedded within our app, that will support people to prepare in the comfort of their home and to use in situ when they are going through the process. This spans across preparation for air travel, a dental or GP visit or school, where there are often many stressors. Putting these supports within technology and providing them in a way that is more accessible and understandable is meeting the goals of science implementation.

Turning to the question about applied behaviour analysis, it is a science within which there are numerous strategies. Often, people confuse applied behaviour analysis with an approach to the treatment of autism, which it is not. Within ABA, many evidence-based practices have been shown to be highly effective. I could list many of them, but I will use as an example functional communication, one of the most well known. The goals of functional communication are to examine distressed behaviour, behaviours of concern or emerging difficulties a child or adolescent is showing, and then to figure out what purpose that serves that person, what the missing behavioural repertoires are or what the behavioural repertoires that are not being utilised by that person are, and how we can upskill them and give them abilities to communicate in a compensatory and more effective way. That can span sign language, gestures, vocal prompts, pointing to a communication board or a picture exchange. There are many ways of communicating, as we know, but the point is that when we upskill an individual and expand communication in whatever mode or system works for him or her, these emerging behaviours of concern will be displaced. The individual will no longer need to do those things when there are robust communication repertoires that are effective. We really need to disseminate these practices or strategies and put them into the hands of people who are not psychologists or subject matter experts in behaviour therapy but who will be able to use them in everyday settings. Parents, educators and healthcare professionals would be greatly empowered if we could work on that.

Dr. Ciarán Seoighe

As for where to next for the Creating our Future campaign, we are getting a good bit of interest from other jurisdictions that would like to do something similar. In the same way we learned from colleagues in the Netherlands and Belgium, it is now our turn to give back. Colleagues from the US, the UK and Germany want to take similar steps in their jurisdictions to have the same engagement with their public, and we are engaging and supporting them in doing that. That is internationally sharing the learnings.

Internally and in Ireland, we need to continue to promote the campaign through conversations such as this and with researchers. That is core to where we take Creating our Future next, getting the campaign findings and the recommendations out there and getting researchers, in particular, to look at the book of inspiration. As we are seeing during this meeting, this is about inspiring researchers and deepening the conversation between researchers and the community. As Deputy Ó Murchú learned, one can spend hours engaging with the researchers who really know this stuff, learning from them and taking those questions to the next level of depth, and that is something we would like to do more of. The public in Ireland has such an interest in research, and now that we have created the campaign and the interest, it is our job to make those connections and bring together that engaged research, the researchers and the policymakers in order that they can get the true benefit of the campaign.

Chairman

I invite Dr. Lopez to speak on the sleep research pilot study.

Dr. Lorna Lopez

Sleep is a core aspect of the campaign, which the public is really interested in. For the pilot study in family sleep the work was involved in different aspects of the research . The first was the technology to measure sleep using sensor technology. We looked to find the best and most innovative technology we could use, which would also be non-invasive. We did pilot work to make sure that we were using the best technology available. However, an important part of that process was the sensitivity and data management of it. You are managing huge amounts of data over a long period. We were guided by Maynooth University in different principles for that. That was the sensor technology. In terms of the activity, we worked to develop straps for different watches based on whether they were wearable or not.

Another aspect of the pilot study was the collection of DNA as part of the genetics study. For that, one method is to spit saliva into a tube to collect DNA and that can be quite challenging. We needed to think of better ways to communicate how to do that. We used things like stop-motion videos and nice communication videos to disseminate and explain that better. However, a real core of our work was using our public patient involvement panel to help us develop our literature, like our consent forms and public information leaflets. It helped us make sure that any of the information we were putting through is using the correct language, that it explains things correctly, and it really helped to develop our approach. Our research parties and research directions have also been assessed. We invested really heavily in setting up that study so we hope that investment will help us in the follow-through of the research project. Does that answer the question?

Chairman

I was looking for something more specifically relating to autism, which Deputy Ó Murchú initially asked about, and the link between kids sleeping at night time, hyperactivity and their not being up at night. Did that form any part of the research or will it form part of the research going forward?

Dr. Lorna Lopez

Yes, going forward. We were trying to get it all set up. For example, we wanted to make sure that it is suitable to have the small unit we are using to measure sleep in a bedroom where there might be a lot of activity at night. With those kinds of activities we thought of more practical solutions. We already know, and international research has shown, the importance of sleep disturbance, sleep maintenance during the night and early awakening.

Deputy Pauline Tully

From our engagement with people over the past months many have said that it seems to make a huge difference if there is a positive experience at school, especially at primary level, if supports are there. It makes a huge difference to a child's ability as they grow older to progress further in education or into employment or to live independently. Has that been found or did it arise in the research carried out?

Dr. Olive Healy

The experience in school is vital for success and for setting children up for success. Sometimes, unfortunately, the systems fail. When we do see where children are experiencing very distressed behaviour and are no longer able to participate in school, that is a systems failure. That is not a failure on the part of a child. Research has significantly informed us on what can be done to prevent that, and what to do when it does occur. There are now several well-developed models available and which are being disseminated but the uptake on these is slow. However, we need to consider them. They are coming from research centres across the globe that include things like the balance programme, universal supports for people who present with severe distress and pre-school life skills programmes. These are all well-developed manualised protocols that could be put in place to prevent distressed behaviour. There is a figure available from AsIAm showing that in summer 2022 there were 800 autistic children without a school place. Many of those are probably not accessing a school place as a result of their behavioural presentation, whether that be aggression, anxiety or any of the other co-occurring difficulties that present with autism. These act as a barrier to the ability to be successful and participate in school and access all aspects of education. That is one thing we are seeing in our research, particularly as it relates to academic skills like literacy. I have done numerous studies where we have examined the literacy abilities of autistic children. I am particularly interested in autistic children who have a co-occurring intellectual disability. They seem to be very often excluded from literacy goals and curricula. We have solutions. We have curricula available that can be specialised, tailored and personalised to their complex learning needs. We need to ensure success in academic foundations and to increase the opportunities to learn. What we see from a behavioural model is that when one embeds skills or when one upskills, when one gives people a behavioural repertoire such as being able to read, write and communicate well, the challenges simply dissipate. However, these skill sets also now become so functional that there are alternatives, a wider opportunity and learning starts to accelerate. We really need to emphasis the research that looks at improving these strategies in places beyond laboratories and participation on research trials. They need to be put into schools and services. In my view these need to be available outside of the subject matter experts.

Deputy Pauline Tully

Has the Department of Education or, more specifically, the National Council for Special Education, NCSE, engaged at all?

Dr. Olive Healy

Absolutely. I think there is a real drive within the Department of Education towards what works and what we need. There have been some great starts on that, but we could be doing more. It could certainly be improved. However, maybe we need to examine models that expand competencies for educators and healthcare professionals. The Department of Education could drive that further. There is a recommendation in The Lancet commission of 2022 on stepped care and personalised care for autistic people. That could also be applied to the education model. One can bring in individuals who may be able to accelerate learning in particular areas. These could be behaviour technicians. They are not expensive resources. We do not have enough psychologists to go into schools and address the difficulties directly and individually. However, we could have stepped care. We could have modules for teachers working in the area of autism to learn these evidence-based practices and to maybe get things like telecoaching through technology and better implementation of them. That is a really exciting area for us to be involved in.

Deputy Ruairí Ó Murchú

Dr. Healy gets to the crux of the matter as it relates to an awful lot of issues that autistic kids and their families deal with, such as distressed behaviour. We all know the outworkings in relation to schools, so it is absolutely necessary to have follow through on assistive technologies or anything that can work. With regard to the research Dr. Healy spoke about, we need strategies for autistic people or those others.

We need as much of them as can be put in some sort of game plan as soon as possible. Dr. Seoighe spoke about operationalising, which is the important part of all of this, so it is a matter of doing that.

I understand the importance of literacy. I have met other people involved in assistive technologies. Sometimes it can be that very simple video modelling showing how to do something or how to deal with particular circumstances. That can range from the very simple onwards. It probably works as training modules for everybody. It is a matter of finding best practice and research and then being able to sell it. What are the witnesses talking about regarding autistic people and specific facilitators for literacy because if you do not get over that hump, it will affect you throughout your life?

Dr. Olive Healy

There are a range of prerequisite schools that involved in acquiring literacy. Some of these are what we call behavioural cusps. It is like putting building blocks in place for somebody to be able to learn. Researchers from Columbia University have done a huge amount of work on this looking at behavioural cusps. These are pivotal behaviours that allow you to be able to access more complex learning activities down the road. It is really foundational learning but-----

Deputy Ruairí Ó Murchú

Scaffolding.

Dr. Olive Healy

Yes. It is very individualised. Behavioural psychology is really good at instructional design, which is a set of skills where somebody can take a curriculum or a subset of it and design it to work for the person at his or her ability and skill level. Most people would wonder how someone who is non-vocal could read but of course, he or she can read through pointing to pictures or signing what he or she is reading and adjusting the type of response and the type of material presented. It is very individualised, so it does take quite a bit of work. People are looking at development of technologies that would feed algorithms so when somebody is not progressing in a lesson, it takes him or her out and back into getting more of that on which he or she needs success. When we see literacy difficulties, the approach is often to give children more of what they are finding difficult, whereas we ask what are the foundational skills we need to put in place to build on.

Deputy Ruairí Ó Murchú

And then give them wins as well so you can build on that.

Dr. Olive Healy

Positive reinforcement is such a vital component of the strategies. How you use positive reinforcement is very varied per different individuals but it is a powerful mechanism in teaching and learning. There are lots of other behavioural strategies that are very effective as well that can be embedded. It is very personalised and individualised.

Deputy Ruairí Ó Murchú

It seems like the only idea for an awful lot of people and if you can find a way of teaching them the curriculum and the means by which they can learn, that gives them fundamental skill sets.

Dr. Olive Healy

Literacy is a lifelong skill. Often with autistic children in their adolescent and older years, people think about shifting focus over to adaptive behaviours and functional living. I always say literacy is a functional living skill and should be continued throughout the life span.

Deputy Ruairí Ó Murchú

It is the means by which you learn. It is the fundamental building block you need. We all get the idea of early intervention. The witnesses spoke about bespoke solutions, which will work for people. We all know the services that are not there. I am not saying we can replace psychologists and speech and language therapists but in a very short period of time, we must be able to offer supports to families even if they are not the supports we may be able to offer in three or four years and see what the witnesses can bring to the table regarding that part of the jigsaw. What the witnesses are doing is brilliant but it needs to be faster and better. Throw something in front of us that we can push because this stuff is necessary. I see real benefits for people who may get the benefits of this in five or ten years' time but I would like to see whoever we can get to straight away. I thank the witnesses and offer my apologies for hogging the meeting, although I do not really mean that.

Chairman

The witnesses mentioned the Department of Education. Is the Government listening and engaging with what the witnesses have learned as it should be? Should it be doing more? Regarding the app, what timeline are we talking about? Where do the witnesses see this? I can see benefits for students going into third-level education. I know some schools and third-level institutions have brought that in on IPads and maps etc. I know it is not the witnesses' remit but we have a shortage of professionals, including psychologists, across the country. We need our third-level institutions to make more places available across occupational therapy, speech and language therapy and psychology. I know it relates to the Minister but I would like to see the colleges coming forward with proposals for additional places because there is massive need. Over 800 fully funded positions across our children's disability network teams, CDNTs, are not filled. Even if we bring in new courses next September, it will be four and a half years down the line before these professionals come into the system so we need to look at providing more places or more graduate programmes for people who may wish to switch careers, for example, from teaching or the medical profession because there is significant need that needs to be dealt with. There are long-term negative implications for those children if they do not get the intervention they badly need. What sort of timeline are we talking about with regard to the app?

Dr. Olive Healy

We are looking for our first context, which is air travel and supports to improve air travel experiences of autistic people and their families, within the next two months. We will then focus on the dental setting and then on GP visits. We then move towards university preparation and supports at university as well. We are excited about how we can bring this. We have a website on which some of our supports are available in written form. We hope to move that into more engaging video explainers that will be more accessible for people because, again, stakeholders tell us reading a five-page PDF document is cumbersome. It is a case of being parents and have lots of stressors in their lives. How can they learn this readily and easily? We are creating e-learning modules for parents across different stages of the life span and with differences in the needs and strengths of their children. How can we capitalise on putting this into the hands of parents and accelerating outcomes for their children?

Chairman

Could Dr. Seoighe tell us if Government is engaging?

Dr. Ciarán Seoighe

The importance of these kind of conversations cannot be stressed enough. It is a real opportunity for researchers to have those conversations. Creating Our Future is a Government initiative to engage with the public. Being able to go to the other side of it and have researchers engaging in these conversations is really good. If it was of value or interest to members, we will happily arrange visits to the research environment - the laboratories - to engage directly in further conversations.

Chairman

I thank Dr. Healy, Dr. Seoighe and Dr. Lopez for coming here today. It has been extremely beneficial to hear their views and the work that is in progress. I can see what the benefit of that would be for my son and Deputy Ó Murchú spoke about it with regard to his son. I wish the witnesses well in that research. It is important that they keep knocking on the door of the Government and the Department to make sure they are listening and that we implement the research the witnesses have proven is the right way forward for young children.

When we resume, we will meet the representatives from Middletown Centre for Autism. We will suspend now to allow our witnesses leave. Once again, I thank them for coming in.

Sitting suspended at 12.30 p.m. and resumed at 12.40 p.m.

Chairman

I welcome our witnesses. For their information, I will explain some limitations to parliamentary privilege and the practice of the Houses of the Oireachtas as regards references they may make to other persons in their evidence. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected, pursuant to the Constitution and statute, by absolute privilege. Witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of that person or entity. Therefore, if witnesses' statements are potentially defamatory of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

We are joined by representatives from Middletown Centre for Autism. We have Ms Rosemary Steen, chairperson of the committee, Mr. Jim Lennon, CEO, Dr. Fiona McCaffrey, head of research and development and Ms Jill McCanney, head of learning support and assessment. Before we hear from the witnesses I propose that we publish their opening statement and submission on the committee's website. Is that agreed? Agreed.

Middletown Centre for Autism is an important cross-Border body that provides a range of services to autistic children across the island of Ireland. The members, including me, were pleased to visit the centre in December. We appreciate its ongoing co-operation with the committee. The centre provides a range of services such as research, assessment and training to a broad cohort of people, North and South. It offers information and services to autistic children and young people, the parents and guardians of autistic children, professionals and policymakers within the autism sector. We look forward to hearing more about its work, its views on policy and how better we can serve autistic people throughout Ireland. I call Ms Rosemary Steen to make her opening statement.

Ms Rosemary Steen

Good morning. I am Rosemary Steen, chair of the board of Middletown Centre for Autism. I am joined by my three colleagues, who the Chairman has introduced. We are all pleased to be here to give evidence. I thank the Chairman and members of the committee for the invitation to attend in to provide information on the role of centre and the services we provide to autistic children and young people, their parents and families, and the educational professionals who work with them. I also thank the committee staff who provided support and guidance in our preparations for today. We appreciated the visit by the Chairman and other members of the committee who are here with us today to the centre before Christmas.

The centre was established as part of a range of education policy initiatives arising from the Good Friday Agreement. It is a body with an all-Ireland remit to provide services in both Northern Ireland and Ireland. It is the only educational body of its kind on the island. The centre was opened in April 2007 to deliver educational services on an all-island basis for autistic children, their parents and families and the education professionals who work with them. The centre has been successfully doing this since then. The creation of the centre and its continued successful operation throughout the island reflects the commitment by the Department of Education in Northern Ireland, and the Department of Education in this jurisdiction, to the development of services for autistic children and young people. Funding is provided equally by the two Departments of Education on the island to support the centre in its provision of specialist support and services not currently available separately to the education sector in either jurisdiction. The centre has been established as a specialist second-tier non-statutory service provider to work in partnership with the existing statutory and voluntary providers to develop and provide specialist autism services in the education sectors in Northern Ireland and Ireland. It provides an integrated package of services, including a cohesive, transdisciplinary learning support and assessment service. This is combined with research and training services together with opportunities for family support and professional development.

I particularly want to mention that the centre has developed an inclusive wraparound model for support of autistic children and young people which integrates support in the classroom, support in the school and support in the home to ensure that the autistic child and young person maximises the benefits from their education placement. The child or young person is at the centre of how our service operates. Each unique case is supported in a way that best supports the child's needs. This is a unique model, and one of which we are very proud.

The centre is established under the Companies (Northern Ireland) Orders 1986 to 1990 as a company limited by guarantee. The board of directors comprises Department of Education, Ireland, nominees and five Department of Education, Northern Ireland, appointees. The appointment of the chair of the board is rotated between the respective Ministers for Education every three years. I was appointed following a public appointments process by the Minister of State, Deputy Madigan. I am supported by my vice-chair, Ms Sheila Darling, who was appointed by Minister McIlveen. It complies with the Governments' requirements in both jurisdictions for public bodies.

The board of the centre, which I am representing here, and both the Departments believe that the centre has developed, tested and proven effective models for supporting autistic children to make the most effective use of their educational opportunities in both jurisdictions. The board is now working with the Departments to scale up this model to permit its use on a more widespread basis in both jurisdictions and to build and expand the capacity of the education systems, North and South, in order to support autistic children. We as a board are proud that this work is now beginning.

Our chief executive, Mr. Lennon, will now talk about the centre's service users and the services provided.

Mr. Jim Lennon

I thank the Chair, Deputies and Senators for the invitation to attend. The centre’s current service profile, the quantum of services offered and the resource allocation to support this was determined in 2012 following a meeting of the North-South Ministerial Council at which the council announced that there would be "a limited expansion of services delivered by the centre and the focus on ensuring a sustainable future". The quantum of services agreed reflected ministerial priorities for each jurisdiction. In Northern Ireland, the priority was to support children with complex autism through the provision of a learning support and assessment, LSA, referral service, working with up to 66 children per year, whereas in Ireland the focus remained on the provision of a specialist training service, with a particular focus on parental training and with a pilot of 12 children per year to receive a referral for intensive LSA support. An advice and guidance service was agreed with an emphasis on the provision of specialist resources and information for the autism community, parents and education professionals.

The centre has identified three core groups of service users for whom it develops and offers services. The first of these is autistic children and young people. The centre’s focus with this group is to assist children and young people who are referred to the centre to maximise the benefit from their current educational placement. The second group comprises parents and guardians of autistic children and young people. The centre’s primary focus with parents is to deliver a second tier autism support to parents in Northern Ireland and in Ireland to deliver core training to parents. The third group comprises professionals and policymakers working in the autism sector, mainly those based in the education sector but including some health professionals who are school based or who provide educational services. The centre delivers second level specialist support services to front-line professionals who work in education with autistic children and young people.

I will now hand over to my two colleagues, Ms McCanney, and Dr. McCafferty, to go through the details of the services we offer.

Ms Jill McCanney

I will take members through the LSA. This service delivers intensive assessment and learning support for autistic children and young people, who despite specialist input from first level services, continue to experience difficulties in their educational setting. The service provides: support for children and young people for up to ten months according to need; a detailed transdisciplinary assessment and learning support plan; specific training and capacity building for those working with the child and young person referred or nominated to the service, and home support and advice for parents in respect of their child’s education.

The LSA team includes specialist teachers, specialist occupational therapists, specialist speech and language therapists, autism intervention officers and learning support officers.

The LSA team works across both home and school settings and any other relevant contexts, such as respite centres and extracurricular activity settings. School and home visits are carried out weekly, providing consistent implementation of recommended supports, modifications and strategies. Training is made available to the child’s school, family and any other professionals or carers supporting the young person.

Individual children and young people referred to the centre receive the same model of assessment and learning support, as I just outlined, in both Ireland and Northern Ireland. There are, however, key differences in the LSA service delivery across the two jurisdictions. The first is that the LSA service in Ireland continues to be a pilot project. The number of children and young people referred annually from Northern Ireland ranges from 60 to 66 while 12 referrals are made annually in Ireland. The focus in Ireland continues to be on the delivery of training for parents, which falls within the remit of the LSA service. A whole-school referral framework has been initiated in Northern Ireland, in which the Education Authority nominates schools to receive the LSA service. An accreditation award has been established by LSA in Northern Ireland. Schools that have completed the whole-school referral process can request accreditation. Members of the LSA team assess schools against an agreed set of accreditation criteria and award schools accordingly. To date, three schools have received the accreditation award.

Dr. Fiona McCaffrey

The first part of the service I wish to speak about is the training and advisory service. Since 2010 the centre’s annual business plan has committed to offering 7,000 parental and 7,000 professional training places in Ireland. We have delivered these for the past 13 years resulting in approximately 91,000 professional and parental training places being offered respectively. In addition, every one of these sessions is evaluated. Over the past 13 years, more than 90% of delegates have rated our professional and parental training as "excellent". During this time, the centre has seen an overall uptake rate of approximately 53% for parents and approximately 50% for professionals.

We deliver training for schools in partnership with the NCSE. This includes scheduled training sessions and specific school-based sessions on request. Both organisations operate a joint training application form for schools applying for training. Our training service was subject to independent inspection and evaluation in 2012, 2016 and 2021.

Our research and information service conducts a follow-up on all children referred to our centre and we report on this to the funding Departments. Data from these follow-ups is also used to tailor the training programme, develop online resources and further enhance the LSA service. The centre uses an ongoing action research model so we are continually updating and enhancing our services based on need. The service also conducts specific research for the funding Departments. For example, we recently completed research for the NCSE.

The service supports best practice by sharing practices, North and South, through research bulletins, online resources, and podcasts. The centre has provided five international conferences since 2015, including a fully online conference in April 2021, which was attended by 1,334 people worldwide. The service has a programme of publications and conference delivery that develops the centre as an international site for best practice. Some further examples of the research and its impact include the What Matter Most Survey, which was a survey done with the Irish autism community in 2021 and 2022. It investigated which supportive practices are meaningful and helpful in an educational setting to autistic children and young people across Ireland. The survey was conducted via MCA social media platforms from 29 November 2021 to 29 January 2022, with 833 young autistic people, their families and supportive professionals. This survey found that one third of autistic students and 35% of parents who responded feel their school experience would improve if they were understood better. Nearly half of teachers said they need more training to effectively support autistic children and young people in school. Two thirds of parents think the sensory experiences of the school environment are challenging for their child. Some 72% of parents of autistic children think their child’s emotional well-being is challenged by the school day. More than half of autistic students who responded said the most important and helpful part of school life is having friends.

During Covid, the centre conducted a series of surveys to drive its response resulting in 60 webinars attended by upwards of 18,000 delegates as well as podcasts and supportive videos. I will finish by saying the centre's training and research division consistently has a positive impact for service users. These services are positively evaluated and researched.

Mr. Jim Lennon

Over the past decade, the centre has built a reputation for excellence in the quality of its services and this has been confirmed by independent joint inspections. The centre has developed an effective programme of work that spans both jurisdictions and has gained recognition as an all-Ireland body providing specialist services to service users. The North-South aspect of the centre’s programmes has enabled expertise to be developed and shared through extensive joint working and co-operation across the island. The centre works closely with stakeholders in Ireland on a range of projects, the most recent being the Autism Good Practice Guidance for Schools, which was recently published by the Department. Representatives from centre sat on this group to develop and write the guidance and are currently involved in the dissemination of same and spreading its use throughout schools.

We appreciate the challenges that face autistic children, their families and the education professionals who work with them, and we are committed to supporting them and the education Departments in both jurisdictions through the continuing development and provision of services and resources for use in education across the island.

Ms Rosemary Steen

I thank my colleagues from the centre for their evidence. Gabhaim buíochas le baill an choiste as éisteacht linn. I thank members for listening to us and we are happy to take any questions they may have.

Deputy Joan Collins

I thank the witnesses for their report on what they do. I visited the centre before Christmas. Most areas have been covered in the introduction. I refer to the number of parental and professional training places offered, that is 7,000. How do the witnesses see themselves delivering more of that? They have a good team around them. How many more professionals and children could they outreach to? I know they are referred to the centre specifically and that it is not an open-door centre. How do the witnesses see their centre moving forward in assisting parents, professionals and children?

Ms Rosemary Steen

I will begin and then hand over to the CEO. The future of the centre and our ability to provide more services is part of discussion under way between the board of the centre and both Departments. We had a meeting with both Departments in Armagh in November and it was a good, open discussion about our ambition as a board to expand our services. The Departments advised us before Christmas that they want to commence a landscape review, which is how they assess how to match the demand to the resources we have. We are at full capacity in respect of resources and the numbers we are currently supporting. I will hand over to Mr. Lennon to address that in more detail.

Mr. Jim Lennon

We normally agree on an annual business plan with both Departments that sets out the quantum of services we can provide. There is capacity to flex within that. We have an upper limit but depending on the particular priorities of the two Department, be it policy priorities or other particular issues, we can move up and down with those flexible bands.

Covid was a significant period of development for us. Prior to Covid, most of our training services were probably delivered in situ.

Those could have been in Cork, Coleraine, Belfast or Dublin. However Covid meant we had to move the entire operation online. Fortuitously, we had invested quite a lot in technology so we were able to move the bulk of the services online. I will let Dr. McCaffrey explain in more detail because that is one area in which we can expand at the moment.

Dr. Fiona McCaffrey

We have ongoing contact with our stakeholders. The centre operates an advisory service. In any given year we would receive over 500 calls, emails, texts and messages on social media. That kind of contact with our stakeholders can drive forward the sort of training we provide. The training provided by Middletown Centre is constantly evolving. Even year to year, we change the sort of training we provide and the approach we take, both face-to-face and online as well as in the mode of delivery. Currently we deliver face-to-face and online and we are working on developing blended models where people can access online and face-to-face over a five-week period.

The centre operates a neurodiversity-affirming approach as well. A lot of work needs to be done around developing training programmes on neurodiversity and neurodiversity-affirming approaches. We will hold an international conference in May where the big theme is on neurodiversity and neurodiversity-affirming approaches.

Ms Jill McCanney

On developments in the LSA service, it is important to note that every time we work with a single child or young person, there is a rolling out to the whole school. That is a very strong part of our capacity-building model. While we are working individually with one child or young person, because we build a capacity of other professionals working with that child or young person we actually reach a much greater population. That is driven by the model of whole-school intervention that we have developed in Northern Ireland. That puts in place a model which allows us to build on the capacity of the whole school but in a much broader context. That is proving very effective.

Deputy Joan Collins

I see that the Middletown Centre can have a huge positive impact on children and other professionals in the school. I thank our guests.

Deputy Pauline Tully

It is great to meet everyone again. I thank them for their presentation. The most stark thing here is the difference between the approach in the North and that in the South, given that this is a cross-border body which is funded equally by the Departments North and South. It is the Department's fault here that it is not getting value for money because it seems to be concentrating on parental training. That is very important, and I acknowledge that, but it is much more important to put the supports around the child.

We have been told that 60 to 66 children in the North access the programme every year but only 12 in the South. How does the centre support those 12 children in the South? In the North there is a whole-school approach where the centre goes into the school and gives the support there as well as going into the home and other activities in which the child is involved. Is the same approach used here?

Ms Rosemary Steen

Ms McCanney handles that so I will ask her to answer that.

Ms Jill McCanney

Yes, it is exactly the same model. When we look at individual referrals, whether it is the 60 young people in Northern Ireland or the 12 young people in the Republic of Ireland, it is the same model of intervention. For individual referrals, we work across both home and school. The difference with the whole-school model is we do not work with individual children. That would usually be an additional three to four whole schools seen in Northern Ireland although they are included in that referral number. In that context, we do not work with an individual child or young person but rather with a team in that school. We set up the team and really upskill it in developing its capacity to offer neurodiverse-affirmative practices in the school's approaches to teaching and learning. While we do not work in the home context within that model, we still provide parental training within that school so the school will invite parents in to attend workshops and training. The focus there is very much on building the capacity of the whole school and how it can develop its environments, approaches, strategies and teaching styles to best support the need of that whole autistic population within the school.

Deputy Pauline Tully

The centre works with roughly three schools a year. I know the centre was founded in 2007. Is it since then or 2012?

Ms Jill McCanney

No, the whole-school model was taken on later than that. I would need to come back on a specific year.

Deputy Pauline Tully

It is very welcome. The centre works with 60 to 66 children and gives them individual attention and then there is also the whole-school model, but there is no whole-school model in the South.

Mr. Jim Lennon

No.

Deputy Pauline Tully

How are the referrals made, particularly from the South?

Ms Rosemary Steen

Ms McCanney might answer that. There is a particular committee relating to referrals from the Republic. It oversees that and makes those recommendations to the centre. We do not select the children. They are referred to the centre.

Ms Jill McCanney

There is a referral steering group in Ireland that has representation from the National Educational Psychological Service, NEPS, the National Council for Special Education, NCSE, and the inspectorate. They make the selection and refer those children and young people to us. We then take it from there. We report back quarterly to the referral steering group.

Deputy Pauline Tully

Have the NCSE or the Department indicated they want to expand the service? It is still a pilot after all these years here. Do they want to make it more permanent and expand it? I know the centre may be working at its capacity but is there a possibility of expanding services by increasing the level of staff?

Mr. Jim Lennon

The answer is probably "Yes". I am qualifying it because the anecdotal evidence we are getting from parents and other professionals is that they would like to see the programme expanded.

Then there is the more detailed issue. The Chair referred to the landscape review. The planning in which both Departments are now engaging with the board and ourselves will probably put that into a much more operational phase. As for the timescale, we are finalising this year next year's business plan. Our business-plan year runs from 1 April to 31 March. I am not realistically predicting that there would be any significant expansion next year. It really takes time to plan and get a run-in so that this is done effectively.

Ms Rosemary Steen

I will comment further on the environment in which the centre operates. Deputy Tully will appreciate this because she was in Armagh. The centre is a unique experiment between two Government Departments on this island. It is the only body of its type. Like the Good Friday Agreement, respect for jurisdictions to make their own decisions is something that we in the centre very much support. We try to make sure that they have the best information to guide those decisions but ultimately we allow both education Departments to make the decisions they wish to make in their jurisdictions while also bringing them together for discussions. That is why the meeting in November, at which senior representatives of both Departments sat with our board and had a very good exchange, was so important. This means that information on best practice in both parts of the island is shared. That is what we are there to ensure. When we see something successfully applied in Northern Ireland, such as the whole-school model, we ensure the senior officials in the Republic are aware of that. Equally, there are some things which are being very successfully done in the Republic that the Northern officials at the meeting were very interested in. Part of our role is to ensure that exchange of information around how these services are evolving happens.

I am also a parent of a boy with autism. I feel it is very important that the voice of parents is there in the decisions that are made. That is part of the engagement that we wish to do in the South to see if the training need is still as great. That will be part of the landscape review. The centre's view at this stage is that the expansion of services should be focused on the child. In other words, the view of the board is that it wants the child's need to be put first. However, we respect the right of both authorities to make decisions in the context of what is correct for their jurisdiction. We would not want to be seen to impose anything from the centre.

Mr. Lennon might clarify that.

Mr. Jim Lennon

The Deputy also raised the question of value for money. That has certainly been almost a core perception from the day the centre was set up. We have clear routines for ensuring both jurisdictions get value for money, and the best way of doing that is by monitoring the use of professional time, that is, where the bulk of the time is spent, and we have a clear 50:50 split. Even though in Ireland it may relate to only 12 children, there is still value in terms of the research, the training and the production of information and resources based on a split of professional time.

That was looked at in some detail in the 2016 inspection, not least by the inspectorate from Dublin, and work was done to be clear that was happening. We have more or less retained that model because it was the one we originally agreed when we tried to put the business case forward in 2012. That is now a bit dated and it needs tweaking but it is still the basis of the current resource allocation. There are jurisdictional issues. We are subject to ministerial agreement. We are not a statutory body, so we do not need statutory legislation per se to make the changes, but it does have to go through the North-South Ministerial Council and the ministerial agreements. We are still bound by the 50:50 funding rules, split between each jurisdiction, which means that, to a degree, it is sometimes dependent on which jurisdiction can more or less afford it, and that has been an issue in the past. The Deputy will be aware of some of the difficulties at the moment in Northern Ireland, for example, relating to budgets and so on.

These are issues we will look at with the two departments, as the Chair said, and with the board to plan the second phase of where we will take the centre. Both jurisdictions and exchequers have made significant investment in the centre and it has proven to be a successful investment. We are now debating what is the best way of scaling that up and operationalising it in order that the benefit will be maximised.

Deputy Pauline Tully

Mr. Lennon mentioned the North-South Ministerial Council. The Executive in the North is not meeting and, therefore, the council is not meeting. Is that curtailing the centre in any way?

Mr. Jim Lennon

No, it does not curtail any of the operational issues relating to how we do our work. We report regularly to both departments and there is an agreement in place whereby we produce an annual report that goes through the Department of Public Expenditure and Reform and the Departments of Finance. From an operational point of view, there is no issue. When the education group is meeting, we provide it with regular reports.

Where it will have an impact is if there were to be a significant change in the role, structure, function or operational requirements expected of the centre. Under the current parameters, that would need to go through the North-South Ministerial Council, unless there were changes at that level. I do not see any at the moment but you never know. It is possible there would be an impact if the current stasis were to continue for a prolonged period.

Deputy Ruairí Ó Murchú

I thank our guests. It is great to have them here. To follow on from Deputy Tully, Mr. Lennon is saying the centre needs a serious increase in the level of resources or else policy changes and that that is where the difficulties, as regards there being no Executive and the problems with the North-South Ministerial Council, come into play. Even though there is no minister in the North, can everything else operate as was previously the case? Mr. Lennon also spoke about engaging with the departments. How does that work at this point?

Mr. Jim Lennon

Within both departments, we have a sponsoring special education branch with which we regularly liaise. That is the group of officials with whom we regularly liaise regarding finance, the production of the annual business plan, reporting and monitoring and any other issues that might arise. There is a clear reporting structure in that regard.

There is also a joint operational group, or executive committee, with which we meet twice a year. The purpose of that is to set out the business plan, which is currently annual even though we had hoped to move to a three-year plan. Again, because of particular issues in Northern Ireland, we receive an annual budget allocation. Both departments agree what their priorities are.

Within that business plan and the current resource limit, we can flex. For example, if Ireland were to say it would increase the number of children being seen to 15 or 20 but if its resource envelope were to remain the same, that would mean we would do less of one thing and more of another. Those sorts of discussions are quite possible and regular.

Beyond that, if there were perceived to be a substantial change to either the role, the function or the operational remit of the centre, that is where ministerial agreement would come into place. If we were to change, for example, the basis of the funding and move away from 50:50 - some have suggested a population-based model whereby funding would be apportioned against the populations of Ireland and Northern Ireland - that would require some agreement of the North-South Ministerial Council. The Deputy will appreciate that that moves much more into the political arena.

Deputy Ruairí Ó Murchú

We all understand that. Mr. Lennon is saying we would be having a different conversation if things were where we would prefer them to be, with the Executive up and running and so on. Would we then be having a conversation about resources? He spoke about a three- or four-year plan and I imagine that would involve expansion across the board.

Mr. Jim Lennon

The original intention, when we put together the New Decade, New Approach deal, was that we would move in Northern Ireland to a three-year budgeting plan. The intention now, with our sponsor department in Northern Ireland, is to move to a five-year plan covering the period 2023 to 2028, which would give a bit more certainty. We are still developing that planning framework, but approval and support for it will be dependent on a number of factors. We will be into ministerial prerogatives at that point, realistically.

Deputy Ruairí Ó Murchú

Everybody sees the appeal of being able to make longer-term plans rather than just continuing as we are. It is another argument for getting an Executive up and running, with the North-South Ministerial Council and all the other parts of the Good Friday Agreement in operation. Nevertheless, we will leave it at that, given it is not the issue we are here to deal with.

Our guests might have dealt earlier with some of the learnings they have uncovered over the years. I understand that at times, they will be very careful in that everybody has his or her own prerogative North and South in regard to what he or she wants to do, but based on what our guests have seen as best practice, what have they introduced and, beyond that, what does the research suggest could be improved, whether that is something that is operated both North and South or only in one jurisdiction?

Mr. Jim Lennon

Dr. McCaffrey might take this one.

Dr. Fiona McCaffrey

At the centre, we have a series of quarterly research bulletins that summarise the research in specific areas. That is the sort of research we like to introduce to the system because, in many cases, education professionals do not have time to familiarise themselves with the new research.

Moving towards a neurodiversity-affirming approach within schools is something of which we are very much in favour. Within that, being child-centred is about trying to understand the perspective of the child, managing the environment and, where possible, taking a co-producing approach. Co-production is something we are introducing in the centre at the moment and it involves consulting more with children or young people and their families about what sorts of supports they need. It is about asking young people what they want and finding ways of engaging with them and asking those important questions.

Our approach, then, is based around co-production. It is strengths-based, child-centred and involves working on the differences, not the deficits. Those are the sorts of approaches we are very keen to introduce into the education system. In my opening statement, I talked about a survey we did. One third of the autistic children and young people who responded to that survey said they wished to be better understood. That certainly is something to take on board. In addition to that, we work with a transdisciplinary team of specialist occupational therapists, speech and language therapists and specialist teachers. Within all our professional backgrounds, we all understand there will be new developments and approaches that are coming along. For us at Middletown, the focus at the moment is very much on empowering and co-producing approaches and trying to introduce them into education.

Deputy Ruairí Ó Murchú

It is the whole idea of making educational settings more comfortable for these children and ensuring they can flourish, for want of a better term. Does that fit into the whole-school approach? In a perfect world, every child would be dealt with individually and would have a bespoke solution. It might not be possible to do that under a whole-school approach but there are a lot of fundamental things that can be corrected for one person that will benefit everybody else, particularly people with autism and others who fall into a similar bracket. There are different parts in play. As we discussed earlier, it is about having the whole-school approach, introducing those strategies, engaging with all the staff who operate within the school, having the necessary conversations with parents, even if that is via the school, and then ensuring there is an individualised approach by special needs assistants and teachers, working from the point of view of what is best practice. It is the crossover between making things comfortable for students and getting the best bang for our buck from an educational point of view.

Ms Rosemary Steen

We would be delighted to have committee members visit a school in Northern Ireland that has benefited from the whole-school approach as parts of its work with us in Middletown, as well as a school in the South that has been working with us. It would give some context, as the committee seeks to make recommendations, as to how it can be done in two different ways.

Deputy Ruairí Ó Murchú

Is one of the ways better than the other?

Ms Rosemary Steen

The centre does have a view and I am guided by the experts in this regard. The question is how to influence society, positively and broadly, in terms of the acceptance of these children and young adults and their needs. We really need to have that society-level conversation we spoke about earlier in order to create a more accepting environment. I worked on that a lot in my involvement with AsIAm. I was involved in the founding of that charity. It is about a whole societal change around how these children are accepted and treated.

To answer the Deputy's question broadly, one model tries to apply influence from the child out, while the other puts a framework around the school and seeks to apply influence in an inward direction. I will hand over to my colleagues to speak about that in more detail.

Mr. Jim Lennon

Putting it in a policy context, the Department in Dublin has spent considerable time with NEPS and the NCSE producing audit and good practice guidelines. The Middletown Centre for Autism was heavily involved in that effort, together with a range of other bodies and professionals in Ireland. The output of that is a very clear and excellent distillation of best practice to date, based on research and evidence. If we were to take that model and those good practice guidelines, we would wind up with a much more autism-competent environment in schools and more autism-competent schools. The reality for a child with autism is that everybody in the school needs to understand their needs, from the caretaker to the cook, principal, special educational needs organiser, SENO, and whoever else. They need to understand what autism is. They need to have a neurodiverse context within which to put the child's situation and they need a set of behaviours that will make the environment feel inclusive and welcoming for those children and will enable their individual needs to be met. The good practice guidelines exist and they represent a distillation of research. It is not the case that something new has to be done.

Deputy Ruairí Ó Murchú

However, as Mr. Lennon knows, putting that guidance into operation is a different kettle of fish.

Mr. Jim Lennon

Yes, and that is, in essence, the discussion we are now having. It is a question of finding the best way of maximising the benefit we get from the guidelines and identifying the best models within our resource envelope that can be deployed and re-employed.

Ms Jill McCanney

The Deputy asked about how we determine what is best practice and how we have evolved and developed our model. One of the really unique aspects of the Middletown centre and one that attracted me to it, professionally and personally, when I started working there some years ago, is the co-ordinated work that goes on between the research department and the learning support and assessment service. As Dr. McCaffrey mentioned, we have an action research model, which means that for every child, young person or whole school we work with, we collect outcomes. Those outcome data go to the research department, which is then able to feed back into the learning support and assessment service and say what is working and which practices schools say they found effective.

Deputy Ruairí Ó Murchú

There is a constant feedback loop, which is the best way to operate any system.

Ms Jill McCanney

Absolutely.

Deputy Ruairí Ó Murchú

Nobody puts the perfect in place straight away. Is that feedback process happening all the time?

Ms Jill McCanney

Yes, all the time.

The Deputy asked what we have learned so far. Something we have learned in recent years relates to the data. Until more recently, it was more about qualitative data. We have been looking at how to capture more quantitative data to show more sensitive outcome measures. We have developed and are currently piloting inventories with parents, professionals and the children and young people involved. Those inventories are carried out at the start of our ten-month period and again at the end to enable us to capture where we are making an impact and where we can make further impacts. A really key part of that is keeping the child-centred model but including an increasing focus on child-led practice. We are learning that we need a child-led model integrated very sensitively into the existing model, whereby we capture the voice of the child or young person and then feed that into their learning goals. A colleague came back last week from a continuing professional development, CPD, opportunity with some very good examples of how we can capture the voices of children and young people and get them to set the goals for themselves that we will then incorporate into their learning support plan. We want to ensure we have that child-led model whereby their voice and what is important to them is really encapsulated in the model. We certainly are learning and evolving all the time but what has stayed the same is that model and that learning support plan.

Deputy Ruairí Ó Murchú

It is a fundamentally brilliant idea. It was missed by many people over many years that there is a need to engage with the people who require changes as to what works and what does not, what makes them feel more comfortable and what makes it easier for them to learn. Alongside the witnesses' own research, incorporating a feedback loop is the perfect way to run anything. They should keep doing that.

As regards best practice in terms of the use of technologies, particularly assistive technologies, that are coming into play, how does the centre integrate that sort of stuff?

Ms Jill McCanney

We have a really comprehensive CPD programme for all our team members. In respect of any potential training and any new developments in evidence-based practices, we make sure we have representation from our team and we offer members those opportunities. There is also a formal feedback process, with monthly meetings, part of which involves looking at feedback from any recent courses and whether any new development is something we want to integrate into our model of practice, whether it will be of benefit to the children and young people we are working with and, if so, how to do it.

Deputy Ruairí Ó Murchú

The child-led model makes complete sense and everything emanates from that. We need to put the structure in place and then see what works, what does not and how to improve it. That allows for consistent and constant improvement.

Then one integrates whatever else from outside works. The report in relation to autism best practice brings me back to identifying what is a best practice scenario. I assume the witnesses are of the view that the whole school operation should be integrated across the board. Is the school setting sometimes more beneficial for putting the supports in place around a child? We know what happens here regarding children's disability network teams. I am not giving out but, as I said, there will always be a bit of a bespoke approach with different services required for different children. From the witnesses' experience, what are the things that work? The idea is that we need to hear what the experts and all stakeholders, including autistic people, have to say.

Mr. Jim Lennon

One of the key things we have learned from our model is that the simple things make life easy. Co-ordination of inputs at any given point in time is very important. For example, a teacher in a school knows that they have a child with autism coming in and they are going to have that child for an academic year. Using the Middletown model, the teacher knows the child needs speech and language input, occupational therapy input or another educational psychology input. We can sort that out very quickly and put it into an education plan. Part of the difficulty, in both jurisdictions, is that if a teacher or special needs co-ordinator knows they have a child coming in and Middletown is not involved, then the person can spend endless hours on the phone trying to timetable in either speech and language therapy or another relevant support that the school or the NCSE may not have. It is not necessarily always an issue of resources. It is more an issue of co-ordination. That is one of the key things we have learned. It is about getting better value for money that has already been invested. We all know there are issues with recruitment and selection. We heard in the earlier presentation about therapists and the need to increase their numbers. Some of the answers are not complex but they are complex to put into operational settings.

Deputy Ruairí Ó Murchú

Is co-ordination easier when it is within the school setting?

Ms Rosemary Steen

In the Middletown model the focus is on the child. That is why I wanted to work in the centre. The child's needs are put first which is a unique approach. It works better because the child gets everything. Once they come through to us and they are on the list for services, they get whatever they need for the following ten months. In the cases where we provide that intervention it is life-changing for those children and their families. I am very passionate about wanting to see that rolled out more. If we designed the service in a way that the focus was on the child as a primary user and designed out from them, rather that designing it to meet X number of users, we would end up with a very different philosophy and model. That might be a bigger discussion than we can have here but I am passionate about bringing that voice in because for those children-----

Deputy Ruairí Ó Murchú

It is a point that needs to be made though.

Ms Rosemary Steen

I think at times we lose the child. In losing the child we are losing a future citizen of our country. As the committee heard this morning, the earlier an intervention can be made, the better for the child and the family in terms of fulfilment and opportunities. As a board, we are passionate advocates for a child-centred approach to be developed and designed. The success of the centre is evident. Fifteen years ago, that approach was untested. Now we have a model where the child-centred approach has been seen to deliver successfully over and over again. There have been fantastic outcomes for children and their families. This is something that needs to be lifted up and have a light shone on it because, globally, it is also at the cutting edge in terms of supports for these children. It is the way that we as a country should be moving forward. I interjected because I feel passionate about this issue. If a service can be designed in that way, it will work for the child. That is critical. It should not be designed for other reasons because what happens to the child is the most important thing.

Ms Jill McCanney

The Deputy asked what the best context was. Our model has proven effective because we work across numerous contexts. Yes, the majority of the child's or young person's day is spent in school. However, the wraparound programme where we are also in the home setting has also been very important. As the parents here will know, the transition from home to school and back again can be really difficult times of the day.

Deputy Ruairí Ó Murchú

Logistical difficulties can be huge.

Ms Jill McCanney

Middletown co-ordinators are able to be, on occasion, in the home to support the transition from home to school. They model strategies for the parents and support them in putting those strategies in place. Similarly, in the schools, the co-ordinators can model the supports that can be put in place and build the capacity of the school to provide those supports. It is not just limited to the school and home settings. We also work in respite settings, where appropriate. We also go on community outings. We provide our support and intervention in real-life settings.

Deputy Ruairí Ó Murchú

I believe I speak for nearly every elected representative in Leinster House in saying that the witnesses have made very convincing arguments about their approach being effective in allowing children to flourish. They have made a fabulous case for what they are offering.

Ms Rosemary Steen

It is also fulfilling for the staff. The shortage of qualified therapists was mentioned earlier. Our centre has had very strong applications for posts because professionals are very attracted to working in this kind of child-centred environment. People want to be involved in genuinely helping children. In terms of the design of the services, this is something that may need to be looked at. It does attract health professionals to work in this kind of service. My colleagues were attracted to Middletown for this very reason.

Dr. Fiona McCaffrey

The action research approach Deputy Ó Murchú mentioned means that we are constantly evaluating and drawing qualitative and quantitative data from the work we do. We evaluate those data and put that evaluation back into the system again. We see improvements and we see skills develop. From that, we have opportunities to publish our work. We have spoken about our work nationally and internationally. Members of the centre are members of special interest groups for professional bodies such as the British Educational Research Association. I review abstracts for the International Society for Autism Research. We are very plugged in to the research world. The platform that we have for this is confidence in our model and in the good work we do. That is enormously attractive for practitioner researchers, which is essentially what we are in Middletown. We are practitioners and trainers but there is also a huge research component. That is what makes us different.

Deputy Ruairí Ó Murchú

It is where research meets action. Once again, I apologise for taking over the entire meeting. However, I lack credibility in relation to that apology. Regarding the children who use the service, do they have very high needs or medium to high needs? I am never quite sure how these labels are determined.

Ms Jill McCanney

The centre users have very high needs. That is why they are referred to us. They will already have received significant input from first-level services.

Deputy Ruairí Ó Murchú

Would it be two things?

Deputy Ruairí Ó Murchú

Are there two aspects involved? I imagine that one aspect is behaviours. Would the centre also be dealing with an awful lot of individuals who do not have certain skill sets and who are non-verbal also?

Ms Jill McCanney

Yes, we have a full range. Looking at our referral profile, in Ireland, we have had around 90 referrals now during the course of the service. There would be a huge profile of difference there. We have non-speaking children and young people right up to very articulate children and young people. They use a variety of communication methods. Our staff would be proficient in being able to communicate using whichever method is comfortable for that child or young person. We work across all sectors – primary, post primary and special schools. A significant number of our referrals would be on a reduced school day, which would be a key area for referral.

Deputy Ruairí Ó Murchú

The centre deals behavioural issues and whatever, such as where kids can get themselves into distressed situations.

Ms Jill McCanney

Absolutely. Going back to what we said, our key goal is that it is child-centred. It is looking at what is causing the child to respond in that way, looking at the whole environment, looking at everyone who relates to that child or young person to see what is causing those distressed behaviours and taking that neurodiverse-affirming approach to it. In addition, a key part is looking at what their strengths and interests are. That is usually the quickest way of de-escalating and helping that child or young person to regulate. The primary part of the assessment as soon we commence our observation assessment is to see what skills that child or young person has, how they communicate and what their interests are.

Deputy Ruairí Ó Murchú

How long does an assessment take? I get that the centre is always doing assessments.

Ms Jill McCanney

There would be a period of assessment that would last up to generally the first month of our input. We aim to produce our learning support plan within the first term. Within the first two to three months of working with that child or young person we have a comprehensive learning support plan based on those assessments and observations. The Deputy is right that it is ongoing. Sometimes, some of those assessments may not happen until later and they then feed into that learning support plan. We review the learning support plan at the interim stage, which is halfway through our input, and again at the final report or hand-over stage. The assessment, as the Deputy said, is ongoing. That learning support plan is very much seen as an active, evolving document; it is not static. It is subject to constant review as we learn more about that child’s strengths and skills and where the supports and modifications are needed.

Deputy Ruairí Ó Murchú

Kids could return to the setting they were in previously but with better scaffolding around them.

Ms Jill McCanney

Absolutely.

Deputy Ruairí Ó Murchú

That is brilliant. They are more, better, faster, quicker. Obviously, we could do with things being sorted that facilitate the centre to do that.

Ms Rosemary Steen

It is important also to recognise that, at times, it may be that the child’s behaviour is appropriate to what is happening to that child in the environment. At times, the board will hear anonymised reports on the different interventions happening. It will actually be something outside of the child that needs to be addressed by the centre. It is important, in regard to the neurodiverse approach that the centre takes, that it is not always to do with the behaviour of the child. It is sometimes to do with the behaviour the child is experiencing and we have to be cognisant of that.

Chairman

I have a few comments and questions. A couple of key phrases keep coming up. They are “best practice” and “the model is working”. Looking it at from the outside, we, as a State, are not utilising what is seen not just nationally, but internationally, as good and best practice. That needs to change.

Over a period, 7,000 parents are getting training, yet there are thousands of other parents out there who are not getting the benefit of that training. Something that I have seen, and I am sure it is happening in other CDNTs throughout the country, is the team within the CDNT is giving training to parents, which I do not agree with, to be honest. The reality is when that training is being given, the children are not getting the service from that professional. Yet, we have the centre that is best practice, is giving training to parents and, with perhaps a bit more resources, could expand that across the country and remove that need for our 90-odd CDNTs around the country. I know from speaking to parents who have gone to training sessions from the centre that they found them immensely valuable. When parents hear those words, it is very hard to take and they do not know where to go or what to do, only for many voluntary parents groups around the country that come in and support people. The State is not supporting families when they get initial diagnoses. This role could be expanded throughout the country in the context of giving training to parents.

There is also the issue of teachers. If it is best practice for parents, it is important for the teachers too. There are not modules within our teacher training college to teach particularly in special education. We have teachers going into schools and sometimes they get put looking after the new special class that opened without actually having had any experience. As was said, the centre has the model of best practice and that should be implemented into our teacher training or SNA courses. Often, it is SNAs within the schools who are working with the kids, but they have not received significant training in working with kids, particularly those with autism.

I visited a number of schools in my home area over the Christmas period. I am aware of something that should be looked at. There are hours for SNAs under the Croke Park agreement. A lot of those do not happen. This is an opportunity. If SNAs could do further training through the centre, which is best practice, that could be taken into account in the context of hours relating to the Croke Park agreement. That would remove the need for them to train outside work hours.

Working with a child and transitioning from primary to secondary was mentioned. Earlier, Science Foundation Ireland referred to how technology and creating apps could help with that. The reality is we will not have professionals able to go with every child through it. Perhaps the centre could work with Science Foundation Ireland on helping to develop that so it could be there for every child. It is the responsibility of the Government and the State to make sure that we try to find the correct technology. The centre’s experience would be extremely beneficial to helping, I think it was Trinity College, to create and develop the app.

I refer to the proposed school inclusion model. There was a trial done in community healthcare organisation 7 area, which would be Kildare and north Dublin. The guests are aware of that. What are their views on that compared with the whole school programme, which is their work in Northern Ireland?

In its final report, which is due at the end of March, The committee will be making recommendations to the Government regarding changes. What recommendations do the witnesses feel we should be including in our report that best reflect their experience and the best practice at their centre in order that we can maximise their experience and knowledge to benefit of kids throughout the country?

Ms Rosemary Steen

There was a lot there. I welcome the Chair’s comments and the fact that the centre was included in the terms of reference and the discussion the committee set about at the beginning. There was a recognition that we were doing something unique and special in the centre.

The board absolutely wants to see the success of Middletown influence the development of the education system in both jurisdictions. We think it is important that the learnings of a child-centred neurodiverse-friendly approach are taken. That lies at the core of this matter. I will not comment on the details of the models.

In regard to the recommendations we would like to make, we have a board meeting next week. We might take that matter back to our board and discuss it formally. A number of our board members have tuned in online today. If it is okay, we might take that query back to them.

This committee is a shining light of hope for the autism community in Ireland because change is likely to happen as a result of its report. We would welcome seeing the model that is unique on this island in terms of best practice recommended in the report. That is something our board would support. We are happy to come back with more detailed recommendations post the board meeting. I will ask the chief executive and his colleagues to comment on the operational aspects of the school model.

Mr. Jim Lennon

I will cover a couple of areas that were mentioned such as initial teacher training. It is an issue of joint concern both in Northern Ireland and Ireland. It is not a unique feature you suffer from here. We are doing some work with both departments. We did a specific programme in Northern Ireland, which Dr. McCaffrey can talk about, about enhanced teacher training or the enhanced training programme, which is specifically aimed at providing skills for teachers. That programme can be replicated here. It is a joint programme in Northern Ireland between us and the Education Authority. Regarding initial teacher training, we have done some work with-----

Dr. Fiona McCaffrey

We have input into initial teacher training at Mary Immaculate College on the Thurles campus. We have had input into that programme since around 2019. It is a successful programme. We also run continuing professional development, CPD, programmes in partnership with Mary Immaculate College. We run a graduate certificate, a diploma and a master's in autism studies with Mary Immaculate College in Limerick. This programme has proved to be so successful that Mary Immaculate College is studying the partnership model we have to replicate it with other organisations. I wish to come back to one of the observations made around transitions. Transitions from home to school, school to home and all of the transitions in between are critical in the life of the autistic child. At the centre, we provide part-day and full-day training in transitions across the life span for autistic children and young people and their families. If anyone is having issues with transition they can go to our website and access that training. We also have online resources to support transition. As was quite rightly said, it is an important issue that is sometimes overlooked. Even smaller transitions a child can encounter in the school day and cognitive changes between different subjects or changes from different classrooms can be enormous obstacles for lots of autistic children and young people. The centre has quite a few resources to address those issues.

Chairman

Only one teacher training institution in the State is utilising or benefiting from the centre's knowledge, Mary Immaculate College. Is there a reason other teacher training colleges are not accessing that same support?

Dr. Fiona McCaffrey

For initial teacher training or core undergraduate training, the only organisation we are currently formally working with is Mary Immaculate College on the Thurles campus. I believe the principal of that school, Dr. Finn Ó Murchú, has had contact with the committee about the work we have done with them in Thurles. I cannot speak for any other organisations. Dr. Ó Murchú contacted us and we developed a plan with him which we have been running for three or four years. I wish to pick up on what my colleague said about the enhanced training programme for teachers. This is not core training; it is CPD for teachers who have completed teacher training. In Northern Ireland, we run an enhanced programme for teachers. It is about increasing access and teachers being readily able to access training when they need it. We run a programme, I think it is in the region of 10,000 additional teacher training places online. We have been running that programme now for possibly two years and certainly for 18 months. That has proven to be successful. We are open to all of that work in the Republic of Ireland as well.

Mr. Jim Lennon

The equivalent of SNAs in Northern Ireland is classroom assistants. I will come back to the whole-school model vis-à-vis the inclusion model. There can be significant similarities there. I looked initially at the pilot and we have talked to some officials in the Department. I think that is one way to go. A neurodiverse approach to children and young people with autism and the autism community requires an inclusion model. When you make a statement like that, it has a significant impact because you have to ensure the school has the capacity to be inclusive and have an inclusive environment. That is a mixture of a series of things, such as skills and competencies, changes in behaviour or it may be changes in routine. As the Chair said, if the child is put at the centre, then the service delivery model and path automatically start to facilitate that. I hate the term "cultural", but it is perhaps cultural as well. The way we have done things, trained teachers and looked at it as we teach "normal" children; there are all sorts of things floating about in the ether which, once one starts digging into, make it a more significant statement than it appears. That is what we have discovered with the whole-school model. It requires a significant change in approach in planning the service delivery in schools. There are school development plans in the North; I am sure there are similar down here. This is what the school must achieve to meet departmental standards. That is where you begin to see the impact.

Chairman

An issue here too that we have no set template for our primary schools. A lot of it depends on the principal and the decisions he or she makes, instead of there being a template across all schools.

Mr. Jim Lennon

Principals and boards of management.

Ms Rosemary Steen

We have been discussing at our board possibly needing to do more training for boards of management that are making decisions on resource allocations within schools. It can be challenging for boards of management to understand the issues relating to proper provision for children with additional needs. It is important in terms of the culture of the school. The committee may consider how to influence and provide support for boards of management to adopt an inclusive and supportive approach towards children with autism. We would also be happy to work with principals' networks, North or South, to support sharing best practice at principal level. It is important that there should be more positive recognition of the wonderful work many principals are doing to include children with autism in their schools. Sharing the people doing the right thing will influence better support for these children across our schools. We encourage that. One reason the whole-school model in Northern Ireland has been successful is recognition, as a board, of principals and schools doing that work well. The committee may consider a recognition scheme for the schools doing it well. It would be very positive.

Mr. Jim Lennon

The other key influencer in schools is the inspectorate. We have worked with the inspectorate and have provided support, training and research. That is then reflected in how they approach schools and the recommendations they make. There are a number of levers but it requires a consistent, co-ordinated approach to lever the types of change needed to develop inclusive schools.

Chairman

I often see green and blue flags when I go by schools; there could be an inclusive flag for schools. A template could be set out for schools here too.

Ms Jill McCanney

That is what our accreditation model aims to do. Once schools have come through the whole-school process, they are benchmarked across a set of standards to show they are that whole-school environment supporting autistic children and young people.

Chairman

They could fly that flag outside the school to say, "We are an inclusive school".

Deputy Pauline Tully

A point was made about being inclusive. A few people used the word "acceptance" today and last week. Some people have an idea that they are inclusive but they are not really accepting. That is where we need to move to. It is about creating awareness.

It is about inclusion but it is also about effectiveness. That is important. The proposal to visit a school with which the whole-school approach has been used is excellent. Perhaps it should be opened up to others, including the NCSE, if it has not undertaken such a visit, and the Department. They might then take the model under consideration.

Ms Rosemary Steen

Perhaps the committee might also want to visit a school we have worked with in the South to see the merits of both models. It is important to give credit to those schools that have been involved. That would be welcome.

Deputy Ruairí Ó Murchú

I am not known for my brevity. We are talking about full societal change across the board. As Deputy Tully said, it is about acceptance meeting inclusivity. What the centre has done is based on a brilliant idea and research meeting action, which means improvement in the lives of autistic people and their families and in wider society. I congratulate the witnesses on the work they have done. It would be excellent to go into a school and take a look. I am always afraid because sometimes, when digging into issues, we look at outlier schools, principals and teachers. We have to find a means by which we can achieve best practice across the board rather than running pilot programmes, as we have done an awful lot, particularly in this State.

Ms Rosemary Steen

Perhaps the committee might also meet some of the children who have worked with Middletown. Listening to some of the reports, I always think how important the voice of the children is with regard to their experiences. That might also be of help. We can facilitate some of the members discreetly meeting some of the children on Zoom, if the children and their parents want to do so. Hearing about the life-changing impact the services have had on some of these families makes it very real.

Deputy Ruairí Ó Murchú

They are living it.

Chairman

I thank everyone very much. I particularly thank Ms Steen, Mr. Lennon, Ms McCanney and Dr. Cafferty for coming down from Northern Ireland. On behalf of the committee, I once again thank them for their hospitality when we visited the centre late last year. I welcome the centre's board discussing my question in regard to recommendations. We would more than welcome any such recommendations. They can be sent to the secretariat and will form part of our deliberations. The committee's early report on the summer programme for 2023 is being debated in the Dáil on Thursday evening. We are hopeful that early part of our work will make a change for a significant number of children, particularly in special schools, this year. A lot of work is going on behind the scenes in the Department to make sure those changes are made on the back of our report coming out late last year.

The joint committee adjourned at 2.03 p.m. until 11 a.m. on Tuesday, 7 February 2023.