Micheál Carrigy (Fine Gael)
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I welcome everyone to this meeting. Before we start our business, I will read some formal notices and the Covid-19 code of conduct. All of 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, 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 the 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.

We will begin with the minutes of our previous meetings and then have two sessions. Session A will run from now and finish prior to 12.30 p.m. In it, we will consider assistive technology. We will then take a short break. In session B, which will run until 2 p.m., we will discuss autism policy and employment. 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 arrangements will apply: the witnesses will make statements for five minutes each; we will then have questions and answers with members, for which each member may have five minutes; and members may speak more than once, if time allows. Is that agreed? Agreed.

First on our agenda are the minutes of our previous meetings. The question is that we approve the minutes of the public meetings held on 17 November and 22 November. Is that agreed? Agreed.

The next item is the consideration of assistive technology. I welcome the witnesses. We are joined by Mr. Fiacre Ryan from Castlebar and his mother, Ms Carmel Ryan, who has considerable experience of working in education. Fiacre was the first non-verbal autistic person to sit the leaving certificate, passing every subject with great result, achieving honours in maths, English and history. In another first, Fiacre has become the first non-verbal autistic person in Ireland to publish a book, Speechless, which was short-listed in the newcomer of the year category at the An Post Irish Book Awards. Fiacre and Carmel appeared in the RTÉ documentary, "Speechless", this year. In it, they demonstrated how he learned to communicate using the rapid prompting method and, later, other assistive technology. We look forward to hearing their evidence today. In light of the work they have done, they are an inspiration to every family in the country and have given hope to thousands of kids. There is help out there for kids, and our job as a committee is to ensure funding is in place to make that help available to everyone. We are exceedingly grateful to the witnesses for attending. I propose that we publish their opening statement on the committee's website. Is that agreed? Agreed.

I ask Ms Ryan to make her opening statement on behalf of herself and Fiacre.

Ms Carmel Ryan:

Fiacre and I would like to thank the committee for this opportunity to address it. My son, Fiacre, has non-verbal autism, and assistive technology plays an important role in his life. I am speaking his words today on his behalf and on behalf of many other children and adults who live with autism.

Fiacre and many more non–verbal, minimally verbal and unreliably verbal people have been denied the supports they need because of one perception, that is, someone who cannot speak is regarded as not having intelligence. This is a common perception held by psychologists, speech and other therapists, teachers, other professionals and even the children's parents themselves, since that is what they have been told. In this country, a non-verbal child's future is decided on by a psychological assessment based on a series of verbal tasks, which he or she cannot possibly access. We do not assume that deaf or blind people have lesser intelligence. Why so with autism? This is the perception that Fiacre challenges by his very presence here today and that he has had to challenge every single day of his life. In his own words, "I'm afraid of people who feel that people with autism are less than others. I am speaking for all who are hidden in a world of outside shadows, waiting to be heard, waiting to be accepted".

Fiacre relies on assistive technology, which we have paid for ourselves down through the years, to communicate and learn. He uses an alphabet letter board - I have two with me - and augmentative and alternative communication, AAC, devices, such as a QWERTY keyboard, an iPad, a laptop and a computer, to type his words. He has learned to communicate in this way by training in the rapid prompting method of education, RPM, which we sourced from the USA and is now being developed by parents in Ireland.

As Fiacre writes in his book, Speechless, he has struggled to complete his education due to a lack of understanding of autism, a lack of supports and resources, and the lack of access to, and training in, technology suited to his particular needs. He writes:

It only seems appropriate to give the same rights given to those without autism to individuals with it. Needing some type of assistance does not make someone less of a person. ... Try to see past the autism and realise that we are the same inside as others. I really only mostly try to show that I am not stupid.

No child should be made to feel that he or she is "stupid". No parent should ever have to listen to those words. Our children with autism deserve better. Assistive technology for each child should be a right, not something parents and schools have to beg for, requiring numerous letters of support, scrabbling to pay for appropriate training, struggling to pay for programmes and apps, and struggling for resources and equipment. Every child should have the right to communication and independence, with appropriate technological resources provided automatically by the Departments of Health and Education throughout his or her life.

In Fiacre's case, his breakthrough came when he learned how to communicate through RPM. Parents are asking the Department of Education to establish a pilot scheme in schools to assist other parents and children. Louis Braille died in 1852, and Braille was only officially adopted in schools in 1918. Likewise, sign language started in the 17th century before becoming an official language in the 1960s. Let us hope that our Irish education system does not take as long to adopt new teaching methods and make assistive technology available to all students with autism.

Fiacre wrote a poem, "Understand the Different", about what he feels like being different:

Teenager sees how I am, sees yet each teenage want, taught to spell some reasons with his sayings, with his telling of each story to use codes, and to reach the world.

He reasons and tells sad tales of history, when people were persecuted and exterminated, and he reckons that some still try to silence ones who are different.

Talk is our utmost difference, and we are silenced when we spell what others do not want to know.

Please listen today to the voices of those who have been silenced by our society. It is time that they are heard, valued and understood.

It is time to support these children and adults properly in communication, education and employment.

Micheál Carrigy (Fine Gael)
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I thank Carmel and Fiacre. That was a powerful opening statement.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I am delighted that the witnesses are here to give their evidence to us. As the Chair says, they are an inspiration to many people. Many young people and their parents feel it is a constant battle to get the resources and supports that they need. I have a couple of questions. Firstly, I will say that it is outrageous for any child to be made to feel stupid. I come from an educational background and feel strongly about that. I also know from my background how difficult it is to get assistive technology for students. It is often the case that the school is looking for it but the special educational needs organiser, SENO, denies it and says there are sufficient resources in the school and that students should get assistive technology elsewhere. If the principal and teachers in the school think that children need this assistive technology, they should be given it.

How was Fiacre assessed if most of the assessments were verbal? There are many non-verbal children. How are they properly assessed? The witnesses said that parents are asking the Department of Education to establish a pilot scheme. What sort of response is being received? Are there positive vibes from the Department to indicate it will consider doing something like this?

Ms Carmel Ryan:

The first question was about how children are assessed if they are non-verbal. They are assessed on a predominantly verbal test. The psychologist might leave out parts of it and use part of the test that might have materials that one can manipulate. The instructions will be verbal and children may not understand what is being asked of them. They are asked to respond to a series of questions, to point to a series of pictures or to match things. They may not understand what the question is. They certainly would not have the verbal skills to say what matches what. They rely on pointing or looking at something. One does not get an accurate picture of what the child can do. There does not seem to be any appetite to develop or look at other methods of assessing children. This is what we use and what Fiacre will have to do. If he cannot do it, his assessment will say he does not have the intelligence for that test. That was Fiacre's experience at four years of age. That assessment went the whole way through school with him until he was assessed by a National Educational Psychological Service, NEPS, psychologist in fifth or sixth class and he was able to use his letter board to answer most of the questions on the test.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Talking to the manager of the local children's disability network team, CDNT, she said there are many children with suspected autism waiting to be assessed. Many of them are non-verbal. There needs to be a change to the methods of assessment. Autistic children are very intelligent young people. They need supports to be the best version of themselves, to be able to progress. Is the Department of Education-----

Ms Carmel Ryan:

With regard to assessments, with assistive technology, which we are talking about this morning, there are new methods of assessing children. During the summer, Fiacre and five other students in Ireland took part in a University of Cambridge study which used brain imaging. It assessed non-verbal children's understanding of language using brain imaging and computer technology. Children were given a series of tests. They had a monitor, as they would for an MRI scan, and a skullcap with all the electrodes. That measured the brain's response to the different questions. A sentence was read out, such as, "Mary blew out the birthday candles on the door," instead of cake. The child's brain then responded since that did not make sense and that was printed out on the screen. That research is ongoing and will be continued next year. If we could invest in it, there are ways to measure children's intelligence and responses without going back to tests developed in the 1960s.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Is that available here? Is it available to a large number of children?

Ms Carmel Ryan:

That study is being conducted in the University of Cambridge, so I am not aware of it being available here. We could look into it.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Absolutely.

Ms Carmel Ryan:

The rapid prompting method, RPM, is not fully researched, only being about ten years old. The Department of Education's response would typically be that it is not researched and it is not evidence-based, and until more research is done, it would not be in a position to support the method in schools. Some schools are trying it and are having good results with it. There is a school in Longford that has tried it, as well as some schools in Wexford and Mayo. They are using it as a complementary method along with other methods in the school. They had great success with it.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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That is good to hear. I thank Ms Ryan.

Eileen Flynn (Independent)
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I thank the witnesses for coming into the committee. Being different does not mean that one is worth less to the world. It is important to recognise that everyone is different, is of equal value to the world, and deserves equality of opportunity to be successful in our own right. I was at a graduation at Ballyfermot College of Further Education a few weeks ago. To some of the students, there is no right or wrong way to be intelligent. To be able to break through the glass ceiling as Fiacre did is incredible. Being the first to do something is not easy. I admire Fiacre for coming to the committee today to try to change the situation for young people.

We see that the RPM can work. I would totally be in agreement with the pilot programme. I am blue in the face from seeing pilot programmes. We can see that they work but there is a question of how to implement them to get better outcomes for people. It is about young people being able to reach their full potential. There are many different students with special educational needs in our education system. Our system is for one set of students. We have to change that by implementing the pilot programmes. The Department needs to tune into this committee and listen to the people who came in front of us to be able to implement what works. Sometimes it is not about recreating the wheel but implementing what is already there.

There is cross-party support with regard to assessment in this committee. We have already made some changes after listening to people's voices. The witnesses coming in today to tell their story will be part of changing the future for young people who are autistic. I thank the witnesses for that. If there is anything else they would like to share with the committee, they should please feel free to do so.

Joan Collins (Dublin South Central, Independents 4 Change)
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I thank Carmel very much for coming in and presenting the rapid prompting method, RPM, which has proven very successful for Fiacre and other children. I got an email from another young woman and parent whose daughter attends Mercy College in Sligo town. She is using it as well and it has been very successful. I commend Fiacre on being a powerful advocate for himself and his other colleagues who are in the same situation.

This is the main question I want to ask. Carmel said the Department of Education does not recognise RPM because it has not been fully researched. Yet, her initial contact was with people in the United States. Is it recognised anywhere else in the world as a tool for people who are non-verbal to use? How does Carmel think we can get the Department of Education to recognise it? Senator Flynn is right in that it is working and a pilot scheme would be good. How can we as a committee then get this implemented, or assist in getting it implemented, in the school curriculum?

Ms Carmel Ryan:

RPM originated in the States. It has been used in many countries all over the world. It is being used quite widely in England at the moment as well. An Unlocking Voices group is very active in England. It is being used in Australia, South Africa and all over Europe. As I said, it is not recognised in schools in Ireland because it is so new.

It is a kind of catch-22 situation. It is very difficult to research something if it has not been introduced. Therefore, in order to research and follow up on it to see how it works or how it can be improved or could work in an Irish situation, we would first have to get it into a school. We would have to be using it in a school and then maybe research and track the children's progress as they go along. Then, at the end, we would see where the children started, how they progressed and where they ended up.

All along, when we have been doing our RPM sessions with Fiacre and when we had tutors over from England or the States, we have been taking videos. We took a video of Fiacre at the very beginning when he was maybe just making two choices - "Yes" or "No". From there we moved to spelling words on the board and then on to spelling sentences. Now, we have some videos of him using an iPad. That is a way of researching it and tracking children's progress but again, in order to do that, we would need to have a school that is willing to take it on, and we have a number of schools. We would need a school that is willing to take it on. We would also need support from the Department to say that with the permission of parents, teachers and the board of management, we would video children's progress once per week, have a look at it as we go along and then maybe produce a paper at the end on how effective it is.

Joan Collins (Dublin South Central, Independents 4 Change)
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I have a second follow-up question. Carmel said it is used right throughout Europe, Australia, South Africa and in the US, obviously. Have their educational systems accepted it as a method in schools?

Ms Carmel Ryan:

It depends. Most of the information I have would come from the United States. Each state would have its own education board, however. Therefore, some education boards will accept it. I think quite a lot of schools and universities in California are using it and have accepted it. Other states may not. It is pretty similar in England where there are different districts. Some districts would approve and support it and others would wait to see how it works in another situation.

Joan Collins (Dublin South Central, Independents 4 Change)
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I thank Ms Ryan.

Catherine Ardagh (Fianna Fail)
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I thank Fiacre and Carmel for coming in. I saw Fiacre's RTÉ documentary, which was just amazing. He is an amazing advocate for non-verbal children. He has no idea how much hope he gives families and children. He must be commended on his bravery. He has his mother to thank. It is always down to his mother pushing things and finding a solution to unlock his voice. I say well done to Carmel and encourage her to keep doing what she is doing.

As a committee, we would certainly like to take on her recommendation to ask the Department to have a pilot study like the one she suggested. Much of the time, it depends on the principals in the schools and how open they are to trying new technologies. There is a big education piece to be done with the teaching population and especially with teachers in autism and early intervention classes. That is part of where we want to go with it as a committee. We are trying to promote the conversation and show the benefits of unlocking someone's voice. Fiacre is a great example of that. I thank him again for coming in today. I know it is hard. Coming into the Oireachtas can be quite daunting, but we need to hear his voice. That is really important for everyone.

Pat Buckley (Cork East, Sinn Fein)
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I wish everyone a good morning. It is an absolute pleasure and honour to be here. I was shocked by the line in Carmel's opening statement that said, "someone who cannot speak is regarded as not having intelligence". She followed this by saying: "This is a common perception held by psychologists, speech and other therapists, teachers [and] other professionals." She is actually meeting resistance on this. She also mentioned paying for it herself. It must be a huge cost for people with fund raising and bringing people in from America and so forth.

Carmel went on to say: "Our children with autism deserve better. Assistive technology for each child should be a right, not something parents and schools have to beg for." That really got to me because this is a rights-based issue. It requires resilience. Carmel mentioned that braille was only adopted in schools 66 years after the death of Louis Braille. There might be a bit of evidence. I have done the mathematics and this method started in America 21 years ago in 2021. Surely, therefore, there is some bit of evidence for it.

My evidence is the fact that Carmel and Fiacre are sitting across from me in today. What Fiacre has achieved should be evidence enough. This is absolutely groundbreaking stuff. It always seems that if something is new and people cannot control it, they will try to shut it down. What I am about to say has been quoted many times. The secretariat will have heard me say in other committees over the years that pharmaceuticals do not do cures; they do customers. Everyone knows where I am coming from when I say that.

Deputy Tully earlier mentioned meeting resistance from schools and the Department of Education. What could this committee do to assist Carmel, Fiacre and others out there? I, too, received a beautiful email from another lady during the week. She was so proud. Whether it is cancer, mental health or autism, it always seems that the people who are directly affected are the ones who come together. It is like they have their own little hub. The challenge is trying to get the people outside of that hub to buy into it. "Normalise" would be the wrong word to use; it is to accept the fact. To describe a person as "not having intelligence" is mind-boggling. To be honest, nobody is stupid. Everybody has a gift and a talent. Carmel and Fiacre have come this far. This is my only question. How can we as a committee push things forward, even if it is for funding for families who are directly affected at the moment?

We may be able to find some avenue from a Department. Funnily enough, we were in the Middletown Centre for Autism last week. I do not know whether Ms Ryan has been in contact with them.

Ms Carmel Ryan:

Yes.

Pat Buckley (Cork East, Sinn Fein)
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Yes, so they have done something to provide assistance anyway. It is not a matter of questions. It just mind-blowing that I am sitting across from a 21 year old.

Eileen Flynn (Independent)
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If there is time, can I ask a question about university?

Pat Buckley (Cork East, Sinn Fein)
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The Senator can.

Micheál Carrigy (Fine Gael)
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We will have time. I will let the Senator in then.

Eileen Flynn (Independent)
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That is okay.

Pat Buckley (Cork East, Sinn Fein)
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We are staring the evidence in the face this morning and I cannot understand why people cannot be supported when something is working. That makes me very frustrated. As I said, we must do something to progress this. No family should be out there begging for something that should be their natural right in order that they can progress in life.

Micheál Carrigy (Fine Gael)
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Would Ms Ryan like to comment?

Ms Carmel Ryan:

I thank Deputy Buckley for that. Families are begging for a computer or a laptop. As Deputy Tully said, the SENO makes the decision on that a lot of the time. They may say that there are enough computers in the school or that you were given some last year or something like that. However, every child has different needs. Every child needs their own computer with their own programmes and their own apps that they like and that they can use. It should be a matter of individual technology and not a blanket decision for the school.

The other issue we have come across with technology is the question of who the laptop belongs to. Where does it go? When a child goes into secondary school, the primary school pulls it back and says it belongs to that school and then, you have to re-apply for something in secondary school. That iPad, for example, in Fiacre’s case, has all of the programmes that he has been using. It has his Grace app and it has his communication system on it. For him to go into secondary school and then have start again and beg for another laptop and try to get all the programmes on it, it is a funding issue and there probably should be proper guidelines. For example, you could get a laptop when you are diagnosed from the Department of Health. That could be upgraded when you go into primary school and upgraded again as is needed during that term. It could be upgraded again when you go into secondary school. Thereafter, if you go to university or to a post-leaving certificate, PLC, course you should be able to apply for something that is appropriate. It should not be a mountain you have to climb every time your child needs something but that is the way it is. Moreover, it does not and should not cost a huge amount. It is a matter of maybe one piece of equipment every two years.

Pat Buckley (Cork East, Sinn Fein)
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I am sure that there enough laptops and iPads being recycled every year that were never used and that never went onto a shelf in a shop. I can guarantee that.

Micheál Carrigy (Fine Gael)
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I call Senator Flynn.

Eileen Flynn (Independent)
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I raise the issue of the right to reach one's full potential. On a human rights basis, that should be a given and one should not have to beg for it.

I am interested in the fact that Fiacre is in university and in his experience of being in university. I also sit on the education committee and we speak a lot about the technology that is now in place in university and colleges. The Minister for Further and Higher Education, Research, Innovation and Science, Deputy Harris, was before the committee and he spoke about making the universities autism friendly. That also means the provision of equipment so that people can be able to reach their own potential.

What has Fiacre’s experience in college been like? What is his experience of the technology he is using? I thank the Chair for letting me back in.

Ms Carmel Ryan:

It has been a learning experience, as they say. Fiacre has just started a history and geography course in Atlantic Technological University, ATU, in Mayo. He is the only non-verbal person on the course, so that is a challenge to start with. The biggest challenge for Fiacre was actually getting into the university in the first place because he did not have sufficient points for many of the courses that he wanted to do. We discovered that if you get into a university course, then you get the supports. However, in our case, the disability officer in one of the universities would not even answer our emails because as far as that office was concerned, it would only take on his case when he was actually in the college. The biggest obstacle, therefore, was getting into the college in the first place but the disability officer would say "That has nothing to do with me”. To be honest, I cannot understand that.

We did get another disability officer in ATU Mayo who took on his case. Fiacre got in as a special admissions case but as a 21-year-old who has done the leaving certificate, who has done courses and who has prior learning experience, he should not have to beg for a place in college. He has proven himself. He has done his assignments. He is well able for the lectures and he is well able to keep up with the course. However, he will get caught out when it comes to exams because he is a slow writer and typist and he needs extensions to do his assignments. He will struggle with the practical aspects of the course and that is something that we will have to work out as we go along. We have got this far so we will stick with it. Hopefully, we will get the supports we need.

Micheál Carrigy (Fine Gael)
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I also want to acknowledge Pat Ryan and Fiacre's sister, Rebekah, who are present in the Gallery today. I am sure his sister, Alison, is watching as well. I acknowledge them for the work that they have done.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I want to raise the issue of the technology that Fiacre or another student used in primary school and how it does not follow them into secondary school. If it is being provided by the Department, it should. Maybe if it was a case where the SENO has been awkward, the Department has not supported it and the school has purchased it themselves, then the school will lay claim to it, which should not happen anyway. I know this because I was the special educational needs, SEN, co-ordinator in the school I taught in and we used to request that the technology the child had used in primary school would come with them to secondary school. Generally, that did happen. It would need updating at times but we had somebody in IT who could look at that and who could update it to suit the needs of the student.

I feel strongly that it should follow a student the whole way, even into employment and from employment to employment. We hear stories again of somebody who, for example, gets a job and who needs assistive technology and the employer has to look for that. Then, if they leave that job after a certain length of time, the same thing happens over again with the next employer. It is ridiculous. It may need adjusting depending on the job but it should follow the person. Maybe Ms Ryan was talking about the situations where the Department has not funded it and it is the school-----

Ms Carmel Ryan:

There is a kind of confusion with schools. Schools think that it was given in primary school, so it belongs to the primary school. That is just anecdotal and is just what I have been told. People have been told, “No, that belongs to the school, and you will have to re-apply”.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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It should not. It is my understanding that the Department has given it to the student. I know of instances where it has come with the student, which is right. That is the way it should be.

Micheál Carrigy (Fine Gael)
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I call Deputy Pádraig O'Sullivan.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I confirm that I am in my office in Leinster House. It is great to listen to Fiacre and Ms Ryan. It is heartening to see their story and I watched the RTÉ documentary yesterday evening.

I was in the education sphere. As far as I am concerned, my motto on all of these assistive technologies is that if they work for the individual or for the student, then as a school, community and a Department, we should be bending over backwards to help to assist any child or student in any way, shape or form that we can. I was interested to hear the earlier discussion when Ms Ryan read out the Department’s typical answers to her. It said it is not evidence based and that not enough research has been done. Is the Department conducting research at present on this technology? Has it committed to conducting that research, given the absence of the research it claims?

Second, I read that the Irish Association of Speech and Language Therapists, IASLT, has misgivings about it. I will ask of it the same question I have asked about the Department, namely, is Ms Ryan aware whether it is conducting research itself on this? If it has committed to doing so, is she aware of any such thing?

Ms Carmel Ryan:

As far as I know, the Department has done no research into RPM, has not sourced any research and has not asked for any research.

It is the same with speech and language therapists. They have said they are not interested in doing research into it. It is very easy, when people are not prepared to research something, to knock it and say they do not support it, it does not work and there is no research into it.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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This committee will be compiling a report at the end of its deliberations. I suggest to the Chair that we request that such research be done on this assistive technology and others and that the Department draft a policy on assistive technology and its merits, not just in this instance. There are other technologies there. Perhaps the committee could make such a suggestion in its report.

The second question follows on from that. I hate to relegate anything to a cost issue but for so much of what we request, cost is always an issue. I note the earlier debate. Do we have any idea of what this will cost per child? I hate to relegate it to that but I would like that information so we would have an idea of what it is. It is the cost of an iPad or a computer and the software that might go with it. What are we talking about? I hate to put it in those terms but I think it would be helpful.

Ms Carmel Ryan:

It would be the cost of a computer or an iPad for each child and then the cost of various apps.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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Could Ms Ryan explain what it has meant for her? It is probably quite an emotional thing. She described how it was like letting down a barrier or dam in terms of Fiacre's use of the technology. Could she give us the personal human side of it and what it has meant to her and her family?

Ms Carmel Ryan:

It has meant that we have got to know Fiacre in a different way. We have always known Fiacre as being non-verbal and having limited communication. Since he started to communicate on the alphabet boards and the keyboard, we have come to know his personality; thoughts; ideas; his opinions - good and bad; what he thinks of the world around him and other people; and his likes and dislikes. We have got to know him more as a person as opposed to a person with autism. We have come to know his personality much better. Regarding things we assumed about Fiacre, for example, that he liked this or that, he has let us know that this was not the case. Regarding things we thought did not really affect, bother or interest him, he is now able to let us know that those things did affect, upset, excite or interest him. We have got to know him more as a person as opposed to a person with special needs.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I thank Ms Ryan and Fiacre. I followed this committee before I landed in it. We have had a fair opportunity at these committee hearings to hear from outliers. I commend and congratulate it on that.

I think the witnesses have sold the idea of RPM. We are not talking about a huge amount of money but rather a pittance in real terms. We are talking about a computer or device and a number of apps. Could Ms Ryan go into the ins and outs of how she became accustomed to and used it and the improvements she saw in her life and the life of Fiacre? My son is verbal but he was slow to speak. Since he is able to speak, he has learned to be utterly offensive to all and sundry, which can create its own difficulties. From what I saw with my son in those earlier stages, I can imagine the frustration. What we have been talking about in this committee is providing a framework for autistic people that enables them to be all they can be in every section of society. This includes everything from primary school through to third level if that is what suits people and into the workforce. If Ms Ryan is talking about people who are non-verbal and if we are not going to give them the means to be assessed initially and then the capacity to actually learn, what are we doing? Could Ms Ryan tell us her individualised story because it would be quite beneficial?

Ms Carmel Ryan:

Fiacre is at the end stage in that he is now able to use iPads, computers and devices. Where he started, where RPM would have started and where we are starting in schools with students who are non-verbal, we would be starting at the beginning. We would be talking about training a tutor or bringing in a tutor. We have one girl in Ireland and a few in England and the US who would come and train teachers. A lot of teachers have done and looked at online training, as have many parents. This is where you would be starting - training teachers and SNAs in a method of assistive technology or RPM. That is where the initial cost would be.

It is relatively inexpensive because much of the time, you are using pencil and paper. I will do a quick demonstration. When we were starting off with Fiacre, and remember that at this stage he was non-verbal, he had lessons in school but not significant exposure to academic lessons. You would be starting with age-appropriate lessons. You would be doing a lesson so let us suppose we were before this committee. I would say to Fiacre, "Are we on the committee on autism or are we on the committee on environment?" Those would be his two choices. Again, you would check that he is listening and understanding. I would ask him whether we were on the committee on autism or the committee on environment. What are we talking about? The answer is "autism". That is just an example of how you would start. It is building tolerance, concentration and a skill. You have to cope with all of the sensory things. The committee can see Fiacre is very tired this morning. There is a lot to take in so he would probably get a lot of the answers wrong this morning. As you go along, you use that for ordinary lessons. If you are doing a lesson in geography, you would have a list of ten questions and give choices with "Yes" or "No" answers. Is it this or that? You would check that the child is listening. You build up a lesson and a lesson plan at the end of it.

Over time, Fiacre would have learned to spell on the letter board. Building up skills, he learns to spell words on the different letter boards. There is a number board on the other side so he can do maths as well. When Fiacre was doing leaving certificate maths, we had another more advanced version of this board where there were percentages, brackets and different symbols, including one for a calculator to which he would point when he wanted to use it. That was what we used for maths.

He built up from words to sentences to writing paragraphs.

He can use the keyboard also.

Mr. Fiacre Ryan:

To find my voice.

Ms Carmel Ryan:

There is a voice output on the iPads with an app called Assistive Express. That has a computer voice, so when Fiacre types a sentence it speaks it back so he has the voice output. He has spelled out that he wants his own computer voice, like Charlie Bird. He does not want my voice anymore. That is the kind of progression one would have. When we do the lessons, we have a progression video where we video Fiacre at the very beginning stage right up along to what he is able to do today.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I thank Ms Ryan and Mr. Ryan. That makes complete sense.

Ms Carmel Ryan:

I hope I have explained it properly.

Ruairi Ó Murchú (Louth, Sinn Fein)
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It was actually brilliant to watch on a particular level. The notion I get is the fact of the frustration when kids have a difficulty in expressing themselves, but especially when a person is completely locked away and has no chance of expression. We can see how Ms Ryan has provided Fiacre with a roadmap to express himself and to be part of society. It has enabled him to get into third level education. From this committee's point of view, it is a no-brainer in the sense that there is no choice but to support this as a roadmap for people with autism who are non-verbal. It makes complete sense.

The two witnesses are outliers. Beyond that, reference was made to the Cambridge research. The State has to get in the game with research and in the context of a pilot scheme. However, it should not do what it always does, which is set up a pilot scheme that remains a pilot scheme. It must actually go somewhere. Then it is about building up a level of capacity around tutoring, learning and so on. Other than that else has to be done? Ms Ryan spoke about her own workaround - or baling-twine solution - for accessing third level. What else has to be facilitated? In fairness, the Minister for Further and Higher Education, Research, Innovation and Science, Deputy Harris, and others have been before the committee and have spoken about the fact, which we all understand, that a huge number of people cannot be all that they can be, whether it is because they come from different socioeconomic backgrounds or from different family set-ups. Then there is the wider issue of disability. We are trying to bridge whatever gaps that exist. What other gaps does Ms Ryan see that need to be bridged at this point, beyond the obvious of a proper means of assessing kids with autism who are non-verbal and providing them with the means and skill sets to be all they can be?

Ms Carmel Ryan:

The Deputy used the word "frustration". That is very common for children with autism, especially those who are non-verbal, when trying to express themselves. Then there are the behavioural problems, the stress and the anxiety for them in going around in a world where they are not understood. When Fiacre had a means to communicate, it was one of the big game changers for us because he was not as frustrated and his behavioural issues lessened. That would be a major advantage in schools.

With regard to the other gaps, I suggest making places more autism friendly. I am aware that there is an initiative to make the Dáil more autism friendly. That would be a great target for the Dáil and a great example for the rest of the country. If someone can walk into the Dáil and negotiate his or her way around it without getting stressed it would be a great example to the rest of the country.

Access to speech and language therapy and occupational therapy would also help. I know the committee has discussed that. I was talking with the Chairman earlier about a way of fast-tracking this. It can take four or five years for a speech therapist to be trained, and then so many of them will go abroad anyway. We are waiting for this crop of speech therapists to come through, but they are not going to be available. There is a whole generation of children who have not had access to speech therapy because of a lack of resources and of speech therapists, and then for the past two years with Covid. A drop-in phone call is what it was called - I do not know what a drop-in phone call even is. You either drop in and meet somebody or you phone them. That is no help to parents. Schemes have been set up such as training the parents to do the speech therapy. I am a parent and I am lucky enough that I am a teacher so I could do some work with Fiacre, but a parent is a parent, and a speech therapist is a speech therapist. One cannot make a parent into a speech therapist by giving them a training programme. If there was a way of fast tracking qualifications for either teachers, for students or for people in social care settings, so that they could deliver a speech therapy programmes and occupational therapy programmes, it could get those children off the waiting lists, get them some support, and get those parents some support.

Ruairi Ó Murchú (Louth, Sinn Fein)
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It looks like we will not have the sort of numbers we need in that pipeline. We are looking at four or five years down the line, which is fine for then, but we need the baling-twine solution in the short term.

Ms Carmel Ryan:

Four or five years for a young child is a huge gap.

Ruairi Ó Murchú (Louth, Sinn Fein)
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I thank Ms Ryan and Fiacre.

Micheál Carrigy (Fine Gael)
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Last week, along with the buildings facilities manager and the inclusion and diversity officer, we did an audit in order that Leinster House will be completely autism friendly by early 2023. Tours can come in and schools can see a video of the tour in advance, with the sounds and lighting and so on. We will have staff trained to help with any person with autism who comes to visit. It is only right that we should lead by example. As the institution that makes the laws of this country, it is right that we should be doing this. It was the push and the perseverance of this committee here that is making this happen. It will be a place in early 2023. Does any other member care to come back in before I continue? No.

I read the witnesses' opening statement. When I was speaking with Ms Ryan earlier, prior to coming in here, I felt that what Ms Ryan and Fiacre would say would be extremely powerful. I believe it will make changes for a lot of families, now and into the future. I will read a couple of the lines from the statement that particularly struck me. "Someone who cannot speak is regarded as not having intelligence ... We do not assume that deaf or blind people have lesser intelligence. Why so with autism?" Reference was also made to what it means to get to know the person, not just the person with autism. In his book, Fiacre wrote: "Try to see past the autism and realise that we are the same inside as others. I really only mostly try to show that I am not stupid." I was particularly struck by this. I speak as the parent of a young autistic son. There is a perception in society that someone who has autism has lesser intelligence. That is not the case. We have to change that in society and society has to change. Fiacre is a fantastic example of that. A method of assistive technology has given Fiacre that opportunity. Yet, there are road blocks between the Government and our educational system that prevent this happening for other kids. I do not believe that is acceptable on the part of the State.

Ms Ryan mentioned a school in Longford. I know the school and I compliment it on allowing RPM to be used in the school. However, the fact is the parents in that school have to fundraise, entirely by themselves, for a person to come in from England because there is nobody in Ireland to do it. There was a person but unfortunately they are no longer doing the training. They have to fund bringing somebody from England to be able to provide this in the school for their kids. I do not think that is acceptable.

We need to make sure the State takes responsibility. We need to make sure the funding is put in place. We have to give every child this opportunity in life. As a cross-party committee, we are united in that goal. We want to make changes. I will be asking the Government and the Minister to put a budget in place for that IT equipment. I have seen it being used and what it can do for a young child. It gives them that opportunity to express their feelings and their inner thoughts that have been blocked up. Ms Ryan said it herself; that reduces the frustration levels and the behaviour issues. We did music therapy with my son at a young age because he was finding it difficult to be understood verbally. We went down that route to try to reduce his frustration. It worked for us, thank God, and we saw the difference. He is thriving in school, as far as I am concerned. He will be what he is going to be and he will be a young lad who will strive. It is my job as a parent to support him but we as a system and a Government have to put the funding in place to make sure that assistance is there in order to give children that opportunity. Ms Ryan's statement here today has really put it up to us and to the Government to make those changes, put the funding in place and give every child that opportunity. That is the minimum we should do.

I thank Ms Ryan and Fiacre for coming up from Mayo, and to Mr. Pat Ryan and Ms Rebekah Ryan, who are here also. I read the book a couple of weeks ago. It is fantastic reading. I wish Fiacre well with the book and with college. I look forward to hearing how he is getting on there. He has shown a lot of families around the country that you can be what you want to be. He should keep pushing and striving. We as politicians need to put the support in place to support Fiacre and his family, and support other families around the country. Thank you very much. Would Ms Ryan like to make a final comment before we finish up?

Ms Carmel Ryan:

I would just thank the Chair and the committee on Fiacre's behalf for this invitation to speak today. I think he had a lot to say. He has a lot to say and probably has a lot more to say. We thank the committee for the opportunity and look forward to its support going forward. Fiacre says "tell him thanks".

Micheál Carrigy (Fine Gael)
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You are very welcome. I thank the witnesses for coming here today to contribute to our meeting. To say it has been beneficial is an understatement. It has been very powerful evidence and I firmly believe it will make a change. A lot of families will benefit. That is what we have to make sure happens. I thank the witnesses sincerely.