Michael Moynihan (Cork North West, Fianna Fail)
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We have apologies from Senator Tom Clonan.

The business of today's meeting is consideration of rights-based behaviour analysis and support. I welcome on behalf of the committee Mr. Alan Tennyson, chair of the Irish Society for Behaviour Analysis, ISBA, and Ms Amy O'Keefe, behaviour analyst at the ISBA, and Dr. Michelle Kelly and Dr. Teresa Mulhern from the division of behaviour analysis in the Psychological Society of Ireland. I am delighted to have them.

Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, 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 any speech that would damage the good name of a person or entity. If they are directed by the Chair to discontinue their remarks, it is imperative that they do so.

Members are reminded of the long-standing parliamentary practice that we should not comment on, criticise or make charges against a person outside of the Houses either by name or in such a way as to make him or her identifiable. Members have to be within the precincts of Leinster House if they are to contribute to the public meeting.

Without further ado, I call on Ms O'Keefe to make the opening statement.

Ms Amy O'Keefe:

We are here for the same reason, with a united goal: to ensure that the rights and freedoms of all disabled individuals are legally enforceable in all contexts. We are a group of behavioural scientists, practitioners and researchers who are actively working to promote a rights-based and values-driven approach to behaviour analysis in Ireland through awareness raising and education and by seeking the regulation of behavioural practitioners and services. We fully support the complete implementation of the UN Convention on the Rights of Persons with Disabilities, CRPD, and are grateful for the opportunity to discuss how behaviour analysis can be utilised in line with that.

Behavioural science is not inherently bad, and behaviour analysis is not a therapeutic intervention for autism; it is a neutral science with the potential for both ethical and unethical applications. Behavioural analytic strategies and principles are utilised across a wide and varied range of settings, including mainstream education, early childhood care, speech and language therapy, occupational therapy, physiotherapy, sports coaching, dance training, human resources and personnel management, the treatment of eating disorders, alcoholism and substance addiction, and typical "quit smoking" plans. Behavioural principles guide everything we do, from going to work to get paid, to going for an extra walk to reach your target steps on your Fitbit. Behavioural principles and behaviour analysis can explain why we do the things we do and are already a part of our everyday lives. Behavioural principles are a fact of life.

That said, significant concerns have been raised by the autistic community and others about behaviour analysis within disability services, and rightly so. Behaviour analysis has a troubled history, and although the application of the science has changed dramatically over the past 50 to 60 years, the behavioural community recognises and strongly opposes the fact that there are still examples of unethical practice within the field. Behaviour analysis should never be used with the goal of normalising or making a person "less autistic" and should always consider a person's values to create supportive and adaptive environments. For me, as an autistic person, the problems with behavioural science and the application of behavioural principles arise when they are used to teach blanket compliance for the sake of compliance or unwanted masking strategies and to encourage the appearance of normativity or neurotypicality. Fortunately, the notion of being "indistinguishable from peers", once espoused by practitioners in the field, has been long since dismissed as inappropriate and harmful.

Many neurodivergent and autistic individuals believe that behaviour analytic services and supports are important and can be offered within a framework that values and respects neurodiversity. Neurodivergent individuals may shy away from speaking positively about behaviour analysis because, at times, "those who express unpopular opinions ... are often attacked and excluded from neurodivergent communities". We want to support a society where every person has the freedom to access information and express their opinions. We wish to engage with those who have concerns about behavioural interventions via open and respectful dialogue. For example, ISBA is establishing an experts by experience panel, which will have a decision-making role in the organisation, a defined role in our feedback and complaints policy and a role in developing mandatory continuing professional development, CPD, for our members. We hope that actions such as these can contribute to mutual understanding and truly neurodiversity-affirmative practices.

Behaviour analysis and the neurodiversity paradigm are not mutually exclusive, nor are they incompatible with each other. As the neurodiversity paradigm has become more widely disseminated and understood, an international movement of behaviour analysts, among many other clinical fields, has shifted practice to become respectful and affirming of neurodivergences. Behaviour analysis should always take a values-based and learner-centred approach that values neurodiversity and prioritises the well-being of those with disabilities, in line with Article 26 of the UNCRPD. The goal of neuro-affirmative behaviour analysis is not to encourage normativity or neurotypicality but to support learners in developing the skills they themselves need to access the environments, activities and communities they themselves want to access.

There are numerous examples of behaviour analysis valuing neurodiversity and prioritising the well-being of those with disabilities. For example, incorporating meaningful choice making; training in the use of augmentative and alternative communication, AAC, devices; using task analysis to empower people in completing activities of daily living, for example, to teach menstrual hygiene; using virtual reality to prepare autistic people for interviews; employing video modelling to teach job skills; supporting self-advocacy and self-determination; using acceptance and commitment therapy and relational frame theory models to identify values and work towards valued goals; informing ethical decision making for practitioners; and promoting trauma-informed approaches. Behaviour analysis has the potential to significantly improve the lives of those who need it most when offered in a neuro-affirming manner. We see this as being particularly important in reducing restraint and exclusion.

Unfortunately, some people with disabilities can experience significant behavioural support needs that can cause a risk to their physical safety and the safety of their families and those who support them. These behaviours can include self-injurious behaviours, physical behaviours towards others and other responses that severely impact their quality of life. Today in Ireland people experiencing these behavioural health concerns are subject to arbitrary restrictions on their fundamental human rights, including physical restraint, seclusion and polypharmacy. It is clear that these people suffer the greatest limitations on their human rights and fundamental freedoms. The behavioural science community is at the forefront of supporting these people, their families and those who support them to reduce these risks and safely remove these restrictions. What is critical is to ensure that those experiencing significant behavioural support needs have access to qualified, trained and regulated multidisciplinary teams.

Behaviour analysts in Ireland want regulation and to ensure that practitioners in the field are operating within a human rights framework, professionally and without causing harm. The regulation of behaviour analysis in Ireland will allow for the creation and enforcement of strict ethics and professional conduct codes that will be created with the neurodiversity paradigm, human rights, disability rights and autistic values at their heart. We have the opportunity in Ireland to create the first fully neuro-affirming culture of behaviour analysis, not just pockets of ethical and respectful neuro-affirmative practitioners but entire systemic reform.

I presented a symposium on neurodiversity and ABA in Ireland at the 16th annual division of behaviour analysis, DBA, conference two weeks ago. I also took part in a keynote panel discussion entitled, "Neuroaffirmative voices reflected in behaviour analysis", along with two other neurodivergent and autistic behaviour analysts. If attendance and feedback from colleagues is indicative of anything, it is that there is a huge appetite for change within our field, a stark willingness to listen to autistic voices on the risks and harms that behaviour analysis can pose when not applied with respect to and understanding of neurological differences and neurodivergences, and a drive to address and eradicate harmful practices.

In the interim, we are committed to developing mandatory continuing professional development for our members, in consultation with divergent communities, where we aim to directly address Article 8 of the UNCRPD. Both the ISBA and the DBA have registers of behaviour analysts and behavioural psychologists, who have met a defined standard of education and training. In addition, the Psychological Society of Ireland, PSI, has accredited masters courses in ABA in Trinity College Dublin, TCD, and the University of Galway. Graduates from those courses who meet the PSI’s education and experience criteria can register as chartered behavioural psychologists. We will develop practice standards for behaviour analysts and psychologists in Ireland that ensure alignment with the UNCRPD and any legislation designed to support its implementation.

Ultimately, banning ABA will not protect anyone from harm as the application of behavioural principles occurs within every walk of life. Instead, a ban will result in further risk of harm to vulnerable populations by exposing them to people who are untrained and unaware of the full impact of behavioural principles. Instead, we propose that behaviour analysis is regulated in Ireland so that those of us who already practise ethically, safely and neuroaffirmatively can continue to do so, while those who fail to engage in the relative neuroaffirmative learning and practice cannot continue.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms O'Keefe. We will now have questions and answers with members. I call Deputy Ellis.

Dessie Ellis (Dublin North West, Sinn Fein)
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I thank everyone for coming and I thank Ms O'Keefe for the presentation. It is a difficult area and I admire anyone who takes it up. I have experienced some terrible incidents involving people with schizoaffective disorder. Dual diagnosis is a difficult area to deal with. As the witnesses will be aware, it is an area we do not have the proper services in place for. Positive behaviour support, PBS, is cited as a person-centred and rights-based approach to supporting people with a learning disability and for autism, including people with mental health conditions who may have or may be at risk of developing behaviours that challenge. We are told that PBS is a core approach in the health services for helping people with disabilities at risk of exclusion from school services and the community. Can the witnesses discuss this point further? Can they also comment on how PBS can reduce the likelihood of potential negative outcomes, such as out loneliness, depression and suicide?

The UNCRPD has urged the elimination of the use of seclusion and restraints, both psychological and pharmaceutical, as therapies. These tactics can be considered to not reflect a human rights-based approach. Do the witnesses accept this perspective or that of the Association for Behaviour Analysis International, ABAI, which maintains that, in the context of a behavioural intervention plan, restraint in some cases serves both as a protective and therapeutic function? Can they discuss immediate measures and recommendations to eliminate the use of seclusion and restraint? The UNCRPD has recommended that these practices be removed.

We are also told that 50% of people with intellectual disabilities in Ireland who are on antipsychotic medications may not have psychotic symptoms. Do the witnesses believe that the appropriate use of chemical restraint, such as Diazepam, in behavioural therapies has been abused? My impressions gained from dealing with the main hospitals in the psychiatric services have led me to feel there has always been an overuse in this regard. I am speaking from experience in dealing with cases in this context.

Behaviour analysis should always take a value-based, learner-centred and rights-based approach. Behaviour analysis in Ireland needs regulation. Is there a problem with unregulated practitioners, especially in private settings, when it comes to the regulations in this regard? I could give the witnesses examples of this but I am mindful of time. I refer to psychologists and specialists in the study of human behaviour and experience.

I mentioned earlier people affected by schizoaffective disorder. I do not know how the witnesses deal with people in this situation but, by God, it is a difficult area. I refer as well, then, to the dual diagnosis issue and trying to analyse this and make sense of things in this context. In many cases, it is very difficult. I say this because I have had a great deal of experience with it. In most hospitals where there are psychiatric services, there are multidisciplinary teams. I am sure that the witnesses' organisations have an input into those and I would like to hear more about this as well.

Michael Moynihan (Cork North West, Fianna Fail)
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Who wants to start?

Mr. Alan Tennyson:

I am happy to start and then my colleagues will join in. That was a comprehensive question from the Deputy, and there was a great deal of knowledge about the restrictions people are facing. The ultimate principle is that all people should be equal before the law. This is something our community absolutely accepts and wants to see implemented. The question is how we do that when people do things that are unsafe, either to themselves or to others. Ultimately, we need processes to be put in place in this regard. Where people have mental health diagnoses, processes are in place that will keep them safe in instances where they are a risk to themselves or others. These processes are often not available to people without such mental health diagnoses. I refer to processes that can allow communities to support those engaging in behaviours that are posing a risk to themselves or others. This is what is needed on that front.

On the other point then, behaviour analysis has always adopted a contextual or ecological view of what is impacting people's behaviour. They are responding in a particular environment. Early in the history of behaviour analysis, we can go back to Jack Tizard, who was working in the 1950s. He was able to demonstrate that implementing deinstitutionalisation and moving people out of institutions and into less institutionalised community settings would show a corresponding reduction in some of these concerning behaviours and risky things. This was very early in the history of behaviour analysis. It is at our core to be focused on the environment surrounding people. Often, institutionalised environments feed into some of those concerning responses we see.

Dr. Teresa Mulhern:

On regulation, there is currently quite a major issue because the term "applied behaviour analysis" is not regulated. Any of the members could leave this room right now and say they are an "applied behaviour analyst". This is not a protected term. I have seen in practice quite a few people claiming to be applied behaviour analysts but without the appropriate accreditation. The damage they have done with minimal knowledge of the behavioural principles has been extreme. Currently, two-day weekend courses are being provided that claim to teach everything people should know for applied behaviour analysis. Unfortunately, it is not that easy. Many people have taken important and difficult principles and applied them without understanding all the ethical undertones accompanying those principles. It is not possible to just go and intervene in people's behaviours without having thought of different hierarchies. In this sense, then, regulation is a massive issue for us now.

Dr. Michelle Kelly:

The Deputy also mentioned the ABAI. This is a good opportunity to highlight an important point.

The culture of behavioural analysis in Ireland is very different from that in the United States and the ABAI is based in the United States. We have an issue with some of the practices that the ABAI supports so we, as an organisation, have disassociated ourselves from that organisation.

We are trying to push for Irish regulations that suit Irish culture and community. We have very different views on the application of behavioural science here compared with some states in the US. In the US behavioural analysis almost had a monopoly on services because it is the only type of treatment, as they call it, or the only approach that is funded by medical insurance companies in the US but that is not the case here in Ireland. We have always had a very different approach. The application of behavioural science here has not been within the medical model, the same as it has been in the US. We wish to highlight the fact that we are not aligned with the ethos of the Association for Behaviour Analysis International. The other delegation has experience of that or may wish to comment on that issue.

Ms Amy O'Keefe:

Yes. I have worked in the area since 2013. I work primarily with preschoolers and I cannot imagine not wanting to work as part of a multidisciplinary team. I accompany my pupils to their speech and language therapy, SLT, sessions and occupational therapy, OT, sessions and found that the similarity between what I do and what their other therapists do is quite stark. Those therapists are always surprised to hear that I am a behaviour analyst. When I explain what we do in Ireland generally as opposed to what happens in the States, and I always hold what happens in the State as the big example of how not to do behaviour analysis, the therapists are always really surprised to realise that our models are similar, such as using tokens when toilet training a little one. The culture here in Ireland is very different. Irish behavioural analysts like being part of a multidisciplinary team because we have stuck to the fundamental principles and roots that are at the heart of behavioural analysis. I mean that we do not exist in a vacuum, that lots of other people can have an input. We do not have a monopoly and do not want one. We want to continue working with others to provide safe services.

Dessie Ellis (Dublin North West, Sinn Fein)
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I asked a question about private places because I want to inquire about a case, which I know is more HSE-orientated, whereas there is a 15-year-old young man with very serious behavioural problems who will be handed over into the care of his mother and, inevitably, there will be serious problems with the kids in that family. That situation is very frustrating. I do not know the qualifications of many of the people who work in these private places and I am sure that our guests are aware of these places. Ms O'Keeffe mentioned participation in multidisciplinary teams. Can I assume that behaviour analysts are tied into the main hospitals and are part of their multidisciplinary teams?

Ms Amy O'Keefe:

I work as a home tutor so I work as part of the home tuition grant that is provided to children who do not have an appropriate school place. In general, they would be private cases because the public waiting list is quite significant. So for the little boys with whom I work, either their occupational therapists come to the house or we travel to their speech and language therapists.

Dessie Ellis (Dublin North West, Sinn Fein)
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Do behaviour analysts engage with or have a role in hospitals and with the HSE?

Ms Amy O'Keefe:

No. Some behaviour analysts do but I do not. It would be fantastic for the field of behavioural analysis to be regulated because it would provide many opportunities for us to link with larger institutions like hospitals or residential services.

Mr. Alan Tennyson:

The members of our society work across a variety of settings in the health and education sectors. I mean both in section 38 and 39 organisations, and with private providers. Also, in education, with bodies such as the National Council for Special Education, the Department of Education and in universities.

Dessie Ellis (Dublin North West, Sinn Fein)
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Very good.

Ms Amy O'Keefe:

Personally, it suits me better because I love to get the full scope of the little person I am supporting, and to be aware of his or her family's dynamic. We talk about the environmental impact because that can cause uncomfortable situations, and especially for autistic preschoolers. I like to observe the household, what happens in the family, how environmental structures are responded to, and how I can best help everyone in the family and that environment to structure their environment to best suit my little pupil. I best suit home tuition, particularly as I am an autistic person and it can be intimidating to work with a really large team. Yes, I am best suited to providing home tuition.

Ms Amy O'Keefe:

Yes.

Dr. Michelle Kelly:

Yes. In terms of the delivery of the service in general, many of our colleagues already consult with the HSE but there is no clear definition of what the qualifications of the individual should be. It is worth noting that there is a certain level of qualification. The majority of people who work as behaviour analysts or provide behavioural support have completed a masters in behavioural analysis. There are four courses across the island of Ireland in Trinity College, University College Galway, the University of Ulster and in Queen's University. Those individuals have a certain level of training and qualification but the regulation piece is missing. Companies and the HSE have contacted us saying that they want to hire behavioural support individuals but they do not know what pay scale to use. We have all of these concerns and issues. I agree that regulation would help to streamline all of that. Regulation would ensure safety and ethical practice. Practitioners must reach a certain standard for their own practice but regulation would ensure things like ease of access to roles within the HSE or the education system, where behavioural analysts are needed the most. Behavioural support provision is not for everybody but those who really do need it should be able to access it more easily than they can now.

Mr. Alan Tennyson:

Ultimately it is about public protection. It is about protecting those in receipt of services.

Our view is those who need behavioural support should be assured those providing it have reached a minimum standard of education and supervised practice and they have ongoing assurance of providers' competence through continuing professional development being a mandatory requirement for practice. That continuing professional development gives us an opportunity to address concerns raised by the autistic community and others as the science develops. Ultimately, we are a learning community and we need to continue to learn as new evidence emerges.

Dr. Teresa Mulhern:

The model in place in Ireland depends on where you are, and almost on who you are. There are some people who are still espousing a medical model of disability in which the disability is contained within themselves and you must cure it, etc. There has been a big movement in Ireland over the past couple of years to go towards a social model of disability wherein the environment is part of what disables people. For example, Currys recently put out an ad where its stores will have an hour for autistic shopping from 10 a.m. to 11 a.m. every day. That is an example of the social model of disability. However, we should technically be going - and this is part of what we are proposing - towards a human rights model wherein everyone has inalienable rights to access environments as they see fit and the provision of care should not be dependent on any factors other than their own humanity.

Dr. Michelle Kelly:

Does anybody else want to take the question on the typical quitting smoking plan?

Ms Amy O'Keefe:

I did it for myself. While I was under supervision I decided I was going to quit smoking and my supervisor helped me to structure a plan to do that. We used shaping, which is gradually moulding your behaviour to where you want it to be. Instead of just going cold turkey, that is, moving from smoking to not smoking, because it is impossible, I shaped up the behaviour. The next day I could smoke five cigarettes, two days later I could have four and another two days later I could have two. I love these little things called squishmallows, which are little squishy teddies. There is a ban on them in my house because I have so many of them. I decided if I could meet my goal for the full four days I had it implemented, I could get one of my little guys. I was reinforcing my behaviour. I was allowed access to something I like if I met the personal goal I set for myself. It took me two weeks to completely quit smoking and I have not smoked in nine months. You are setting a goal for yourself and you are shaping up. We call it shaping in behaviour analysis. You are not expecting to achieve the goal right away and instead you are gradually cutting down and gradually becoming less of a smoker. There is the reinforcement of having better health, which is an intrinsic one, but you can also choose arbitrary reinforcement for yourself. You could decide that when you totally quit smoking you will use the money to buy a new laptop or a fancy handbag.

Ms Amy O'Keefe:

In a very autistic way.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Our guests are welcome and I thank them for the presentation. This committee is about the implementation of the UNCRPD, which very much endorses "Nothing about us without us". Alarm bells ring when autistic people and organisations representing them are so opposed to ABA and progressing disability services. I assume that is not based on a whim. Why the opposition? I have to be guided by autistic people and what they say. Our guests have indicated the practice can be harmful and has been in the past. It has changed and needs to be changed further. There needs to be a human rights-based approach. Is the lack of regulation not the key here? This needs to be regulated to ensure it is not harmful and there must be very strong engagement with autistic people and their representative organisations. I will be guided by them, as I will be by all disabled people, because they know best what is right and should have choice in the matter. That is what is important.

The bigger issue is that psychologists are not regulated. Until there is regulation of psychologists and, as a further step, behaviour analysts, we are going to have issues with people who are not properly trained and who are going to do more harm than good. That is the bottom line.

Restraint is a huge issue as well. We know it is being used in schools. It is physical and also involves the use of drugs. It is still being used through the use of drugs in many institutions. Behaviour is being controlled by basically drugging someone so he or she is not aware of what is going around him or her and that is totally wrong.

Those are my concerns. The autistic community must be convinced this area needs to be regulated. Those are the two main points I wanted to make.

Dr. Teresa Mulhern:

I am autistic, so when I hear somebody say he or she wants to listen to autistic people and the disabled community, that is key and something we have really struggled with as a society. I grew up in the 1990s, when my rights were not enshrined in law. I had to muddle through a system that did not protect me at the time. As a behaviour analyst and an autistic behaviour analyst, it is important to me and my fellow people here that the human rights of autistic people and anybody we work with are completely enshrined in our practice. Granted, it can sometimes feel awkward to hear those attacks towards applied behaviour analysis, but as we have said, those are justified. We are not going to sit here and say nothing wrong has ever happened in the science, because it has. It is important we acknowledge that, because if we keep pretending these things did not happen, then we will continue to make the same mistakes. That is what human beings will do.

We are proposing a coalition, almost, between the neurodivergent autistic community and behaviour analysts. Behaviour analysts do not want to do anything to the autistic community, rather we want to work with them to help them gain access, as we said, to the environments they want to engage in and the skills-based learning they want. That is part of what we are suggesting Irish behaviour analysis can do because we have that opportunity. We have vocally distanced ourselves from the Association for Behavior Analysis International, ABAI. Much of the autistic community has come out against the ABAI, including, for example, the Judge Rotenberg Educational Center. We are making it clear through many policies and the recent Division of Behaviour Analysis conference we had in Athlone, where the entire theme was around neuroaffirmative care. The majority of symposiums and keynotes were given by autistic practitioners. Thus, we are seeing a shift. It is not going to happen straight away, but we are proposing regulations are going to be a key part of doing that, in line with hearing voices from the autistic community.

Ms Amy O'Keefe:

Also being autistic, I have a lot to say on it. Brian Middleton, who is quite a well-known board-certified behaviour analyst in our field, calls it middle earth because we live between the two communities.

Among some practitioners there is still a lack of understanding of why behaviour analysis is not viewed in a positive light. These can be practitioners who see nothing wrong with expecting a child to be sitting perfectly still with their hands on the table and staring at the practitioner in order to listen. There is, however, an even bigger percentage of our field who understand that fidgeting, twisting and not looking directly at the person who is talking are an autistic or divergent way of taking in information and processing information. Practices such as "Quiet hands, look at me, feet flat on the ground" can even be forced on neurotypical kids, which is totally in opposition to what we all know about child development. The majority of us know that the practices forcing this are not only unethical but really unnecessary. There is a greater understanding now about how the autistic brain operates and how we process information - I will stick to autism because it is the one that I know. I very rarely come across other practitioners who still insist on the eye contact or the still hands thing, or who insist on complying with an instruction simply because he or she gave the instruction. It is totally unnecessary. If I want to assess how a child understands prepositions I will not sit the child at a table and do discrete trial teaching, which is heavily criticised and rightly so because it is boring. I will not sit there across the table and expect a three-year-old to point to the picture of a box under a table. I will get down with the child with my Playmobil house, which I bought specifically because I love these and I could never have one as a kid. I will sit down with that house and its little people and I will assess that skill through play. If the child decides then that he or she is done with the Playmobil house I would not be focused on having to do the prepositions with the house because I had said we must do it with the house. The child may want to choose something else. If we get a train, for example, then the train can go under the tunnel and so on. It is not a teaching strategy it is a philosophy, which can be applied in everything. This is what we want.

We want to have regulations and an ethics code that our register of certificants must adhere to, in order that we will know that everybody is practising this way. If parents see something they do not like they can report the practitioner to us. If the practitioner is not adhering to a code of ethics that says he or she must practise in a way that respects the autistic person's human rights and their values, then the practitioner cannot practise, and we will take it away. Consider the Teaching Council, for example. I am a Montessori teacher. My undergraduate degree is in Montessori and I have taught in special education through Montessori for a very long time. We have the Teaching Council and if there is an issue with a teacher, it is regulated and it goes through from the staff, to the principal, the board of management and then to the Teaching Council. This is what we want. One does not continue to allow that teacher to practise unethically, because there is a code that teachers must stick to. As behaviour analysts, this is what we want. We want a code whereby somebody can say they are not happy with how a person did something. If the petitioner did not adhere to the code of ethics then he or she cannot practise any more.

Dr. Michelle Kelly:

The point was made about having to listen to people. We completely agree that this is important. ISBA has set up the experts by experience panel. We want to hear the voices of all individuals around what their needs and wants are. We have listened very carefully to the concerns that have been raised by the autistic community, as I am sure the members have. We have also listened to the individuals who have had very positive experiences with behaviour analysis and with those behaviour supports. It is very important to get a well-rounded view and to listen to the experiences and opinions of everyone. We hope that this is what the experts-by-experience panel would be able to bring, and that we would be able to listen to the voices of all of those individuals.

For some individuals who may require more behaviour supports, it is more difficult for them to be able to communicate their desires, their values and their wishes. As behaviour analysts this is what we work to do. We work to try to figure out how to encourage or promote the environment to be able to support that individual to be able to communicate. For example, if somebody chooses not to use vocal speech, they can use an alternative method of communication. In general, we do not want to get into "This versus this" or "He said, she said". We want to make sure that we have everybody's voice but we also need to focus on the key point here, which is how to ensure that any kind of behavioural support provision is provided within a human rights framework. The necessity for behavioural supports is not going to go anywhere. There will always be individuals who require behavioural supports.

I also completely agree with the point made about psychologists not being regulated yet. I am a member of the Psychological Society of Ireland, PSI. We are working with psychology undergraduates and we are supporting the Psychological Society of Ireland with regard to submissions to CORU. Hopefully, CORU will regulate psychology in Ireland. Then there is the division of behaviour analysis and the Irish Society for Behaviour Analysis. We are already working hard to try to ensure that CORU can also regulate behaviour analysts.

Thus far, the Psychological Society of Ireland has accredited two masters courses in applied behaviour analysis. This means that individuals who have an undergraduate degree in psychology, and who go on to do those masters courses and accrue appropriate experience, can become chartered psychologists. While it is not proper regulation, at the moment in Ireland this is the only kind of regulation we have for the recognition of the title of psychologist.

Aside from that, we have a number of people who have experience in behaviour analysis or have done the masters course but who do not have the undergraduate degree in psychology. Those individuals cannot progress towards chartership with the Psychological Society of Ireland but this is where the Irish Society for Behaviour Analysis comes in. We are working really hard to try to set up those structures to ensure that we can get then knock on CORU's door to say "Here is what we have, regulate our profession".

Mr. Alan Tennyson:

That is exactly right. This is the reason there are two organisations here with the committee today, namely, the Irish Society for Behaviour Analysis, and the division of behaviour analysis of the Psychological Society of Ireland. Essentially, the way the field has grown is that people with different undergraduate degrees, for example in nursing and social care or pharmacy - we have supervised pharmacists in the past - have gone on to study behaviour analysis without another organisation that would block their progression to professional practice. We want the field to be broad, inclusive, and to include additional disciplines. This is why we have two organisations: one for those with an undergraduate degree in psychology and one for those who have undergraduate degrees in different disciplines. This probably reflects what is happening and is likely to happen at a European Union level. Dr. Aoife Mc Tiernan at the University of Galway is president of the European Association for Behaviour Analysis. We have very close links with our European colleagues and our colleagues in the UK Society for Behaviour Analysis, SBA. Together with those organisations we are working on standards for training and supervised practice and experience, as well as ethical standards that can be met at a European Union and UK level, with national regulation for the profession at a national level. This is how we hope behaviour analysis will develop in the future.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I thank everyone, and in particular for their opening statements. I have three or four questions. The committee has been informed that PBS is a core approach within the health service for helping people with disabilities who are at risk of exclusion from school, from services and from the community. Perhaps the witnesses will come back to me on that.

Will the witnesses also discuss how scientific knowledge can be contained within the UNCRPD, while ensuring a transition from a medical model to a human rights model, and ensuring meaningful consultation with people who have disabilities? That is another area.

I have two more questions and then the witnesses can respond. Can they further discuss the benefits of PBS and how it targets social behaviours to increase participation and the opportunity for friendship, whether it is dating, collaboration with others or just getting along with others in the workplace or the community, which is so important? They might also outline how we can see the decrease in the likelihood of potential negative outcomes such as loneliness, depression and even suicide. These are all things that we need to discuss. According to ISBA's opening statement, it is "establishing an experts by experience panel, which will have a decision-making role in the organisation, a defined role in ... feedback and complaints policy and a role in developing mandatory continuing professional development, CPD, for our members". Is there a timescale on that? I think it is positive. I hope it will happen quite soon. My last question is about awareness. I note that the ISBA had a conference in Athlone in April. Like other speakers, I am very mindful of awareness and how we can make people aware, including families and even ourselves more generally. How do the witnesses feel about an awareness campaign, or what can we do going forward? It is something that we are learning about every day. What can the witnesses see happening in this regard as we go forward?

Dr. Teresa Mulhern:

I have done quite a bit of work on exclusion recently, because in conjunction with being a lecturer, I also do some part-time work as a behaviour consultant. Quite a few teenagers have been referred to me recently after they have been expelled from their autism units due to challenging behaviour. They have then had to try to get onto the home tuition programme, but a lot of their tutors do not have the necessary skills to work with them. Then somebody like me comes in. The whole point, from a human rights framework, is that everybody should have access to things like education, healthcare etc. In this particular scenario, I recently worked with a person who just basically could not leave his house for months on end because his behaviours were so challenging and Covid happened. I think he had not left the house for about two years. His mum had not been able to leave the house either. We worked really hard to get him back into school again. He is now full-time in school again. The point of positive behaviour support or applied behaviour analysis - we can use those two terms almost interchangeably - is to teach somebody the necessary skills in order that they do not have to engage in these challenging behaviours. For the particular individual I have referenced, whenever he would aggress, it was because he found something too difficult. All we had to do was to teach him the lámh sign for break. We saw a massive decrease in him biting, kicking, and what we would call restitutional aggression, including grabbing chairs and flinging them. Now, he is back. He was not allowed onto the school bus at one point because he was so aggressive. This is where we talk about behaviour analysis making a meaningful change. He was stuck in his house for two years. The family could not go on a day out. They are now doing that. The whole point of behaviour analysis is to move completely away from that exclusion-based model back in towards meaningful inclusion. We had to change around his curriculum so that it contained the stuff that he found interesting, for example, not just doing maths for the sake of doing maths, but including flowers as part of the lesson because he loves flowers etc. It comes back to what we were saying earlier that things should be based upon an individual's values and interests.

Dr. Michelle Kelly:

I might respond to the Deputy's point about loneliness and depression. I work with the dementia community, predominantly. There is an increase in early diagnosis for dementia, which is excellent, but we also see very high rates of what we call behavioural and psychological symptoms of dementia, like loneliness, depression and anxiety. We tend to see polypharmacy used if an individual is expressing these types of symptoms. With behaviour analysis or behavioural support, we will assess the individual's environment and we will look at rehabilitative actions. We will seek to identify the goals and values that that individual wants to work on. Usually, we can work with the individual directly around identifying them, and then we implement those sorts of behavioural support plans to help that individual. I work a lot in dementia advocacy. If, for example, the person identifies that he or she is lonely, then we need to understand what that means for that individual. Loneliness does not just necessarily mean that you do not have a family member. You can feel lonely surrounded by people. We identify the goals for the individual, but they really need to be actionable steps. We try to identify if the individual is willing to go to a local advocacy group or a local community support. Around awareness raising, we are very lucky that we have the support of the Psychological Society of Ireland in running our annual conference. The conference that we mentioned was our 16th annual conference.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Well done.

Dr. Michelle Kelly:

It was a lot of hard work. We also run workshops and CPD events throughout the year as well. Being honest, when we are running those types of events, we are raising awareness within our own community and within psychologists. We really want to branch out further and reach out to families, teachers and schools, as the Deputy said. We have decided that we will do a three-day conference instead of a two-day conference next year, but we will have one day dedicated solely to community outreach. We are working towards that.

Ms Amy O'Keefe:

Around the awareness part, as Dr. Kelly said, it was fabulous that there were so many people there to hear a keynote that was kind of describing how our science did things wrong and setting out what needs to be changed. In one way it was almost preaching to the choir because looking at all the people there, they were willing to be there and to listen to me as an autistic person tell them what they did wrong, so clearly they were open to learning. On the other hand, I had some colleagues come up to me and thank me because not they had the language they needed to go and advocate for neuroaffirmity. There can be a fear, particularly with neurotypical practitioners. They are not sure how to word things or what the right way to approach something is. I had colleagues and peers come up to me and say that my keynote was great and it contained all the stuff they wanted to learn, and they now had the language to go and disseminate it further. Our message of neuroaffirmity is going further. I would hope to be heavily involved in developing CPD modules as well. I am very ambitious. One day I will have modules on neuroaffirmity in NUIG and Trinity .

Dr. Teresa Mulhern:

Probably next year.

Dr. Michelle Kelly:

Next year.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I well believe it.

Ms Amy O'Keefe:

I have an Instagram page on which I try to do videos and lives and stuff. I have been asked by my previous placement supervisor to work with a group of behaviour analysts in Northern Ireland on delivering a workshop on neuroaffirming practice for them. Colleagues who were not able to get down to the conference are able to learn virtually.

Mr. Alan Tennyson:

The Deputy mentioned the experts by experience panel. We see it as an ongoing process. We do not intend to-----

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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To form one.

Mr. Alan Tennyson:

One of the first actions we took was to form one. We are actively seeking members for that panel now. The plan is to bring together a group, facilitate that group, let people get to know one another and form a bit of a community together. We will facilitate that group at the outset. We intend for that group to be a self-directed division of the organisation, which elects its members. Those members will have a seat on the administrative committee.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Mr. Tennyson mentioned groups. Perhaps he can explain that to me.

Mr. Alan Tennyson:

What we are looking for is people who have experience and have been in receipt of ABA or PBS. We recognise that because of the unregulated nature of it, people may have received services that were described as behavioural, but they are unclear as to the qualifications of the practitioners. Those people's experiences are evidently valuable as well. We do not just want to hear from those who have had positive experiences. We want the community to be able to access that and to be able to provide meaningful voice and representation in the organisation on an ongoing basis, in order that that process can be embedded into how we do business.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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That is great; it is very welcome.

Michael Moynihan (Cork North West, Fianna Fail)
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As Deputy Cairns is due in the Chamber, I ask Senator Seery Kearney to allow her to speak first.

Holly Cairns (Cork South West, Social Democrats)
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I thank everyone for being here today. This is a very candid discussion which is important. It is great that there is willingness to engage on this matter. The situation presented to us is that the committee is aware of significant controversy in the field. We noted that in our recent report, for which there was significant support. People contacted individual members expressing support for the report. In contrast, the witnesses have provided us with links to individuals and groups which believe in the practice and how important the supports can be. AsIAm, which is one of a handful of DPOs with which we have engaged, has publicly expressed opposition to it, stating that it is not compliant with the CPRD. I have not been able to find any comment from the UN committee on the matter. Does anyone, including any of the other members, have any information in that regard?

We all accept the evidence the witnesses have presented and their sincerity. Do they have any other advice or input that would help us better address the issue? They will be able to see the position we are in as a committee. Will they describe how informed consent can play a role in this area and the controversy we are discussing? We have spoken about the Assisted Decision-Making (Capacity) Act, the issues with it and also its benefits. How can consent come into this conversation? I seek some guidance in this regard.

I will be happy for Senator Seery Kearney to contribute before my questions are answered.

Mary Seery Kearney (Fine Gael)
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There is no need.

Holly Cairns (Cork South West, Social Democrats)
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I thank the Senator.

Mr. Alan Tennyson:

I will start with consent and assent. Assent in behaviour analytic practice, even for those without a voice, means that they continue to engage. In the case of Ms O’Keefe and her child who walks away when they are no longer interested, that is the assent-based process. They are moving away from this because they no longer want to engage in it. Assent-based practice is forming a mainstay of behaviour analytic practice and its evidence base is getting stronger. That is where learning takes place - when someone wants to engage in the learning.

Consent is different because a person can consent to do something at one point and then not engage in it later. We want to see both consensual practice and assent-based practice. The Assisted Decision-Making (Capacity) Act is vital. It is very welcome in supporting a community, members of whom may have impairment around their decision-making or the required support of that Act. It is very important for us. It clarifies that decision-making and some of the matters Deputy Ellis touched on earlier. It puts the rights of the person at the forefront and provides that any decisions by the person and his or her decision-maker reflect the will and preference of that person. We really want to see behaviour acknowledged as will and preference. Where Dr. Mulhern’s young man is very unhappy in school and is expressing that through his behaviour, that should be addressed as will and preference. Dr. Mulhern is able to support that young man to develop skills and now he is happy in school because he can express his needs. Again, that is him expressing his will and preference. It is very much tied. We are looking forward to working more on assisted decision-making in the years to come.

Dr. Michelle Kelly:

On engagement with members of the autistic community to directly oppose the implementation of behavioural science practices, we are engaging with certain individuals. We are having discussion with individuals who have been very openly against these practices. When we sit down in a room, have a conversation with people and explain the perspective we have shared with the committee today and how things can be done in different neuro-affirmative ways, we generally get agreement from those individuals and achieve some mutual and shared understanding. We have made great progress with some of those groups. We still have a bit to go but we believe it is about having an open conversation. As mentioned in our opening statement, we are all here for the same reason and when we have that shared understanding and work towards those shared goals, we tend to see progress. We are very hopeful that more of those conversations will happen in future. Hopefully, it will make the committee’s decisions less difficult.

Mary Seery Kearney (Fine Gael)
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Those were very interesting and pertinent questions. I thank the witnesses for the frankness shown in their responses. It is much appreciated. The acknowledgment of the fact there is a reputational issue with behaviour analysis needs to be front and centre. Each of us has heard of very abusive situations where individuals' right to dignity has been fundamentally undermined. While that may be done by the behavioural analyst who is engaging with the individual in question, there is a systemic issue there and I want to focus on that.

The illustration given by Dr. Mulherns was very good. We heard the term “will and preference”. For an individual who is very unhappy in school and is expressing that unhappiness, albeit not in a conventional manner, that is an expression of his or her will and experience and a withdrawal of consent to be within that experience and to be forced to be in that experience. I agree, therefore, and I can see where there are tools and methods of engagement that assist that person in expressing and coping with an environment that is ultimately beneficial for the individual, in education or whatever. Where are we tackling the fact that children are being excluded in the class and also expelled in extraordinary circumstances? They are expelled because there is an intolerance or an inability to cope. I am not denying that there are resource issues - I am not blind to that or trying to whitewash it – but there is a systemic issue. I would advocate that we need a neuro-affirmative society. If we look at universality, universal design and inclusivity, we should not have people having to shop during one hour of the day but, rather, we should have shops where everyone has access all the time. A big multinational will be able to engage behavioural analysts to assist it in its marketing and strategy, social media and a whole heap of other areas. Are behavioural analysts engaged at Government level? Should they be engaged? How do we encourage that and ensure we have it? I want to hear how behaviour analysts would pitch being involved in that because if we are to move to a neuro-affirmative society, that is what we need. We need the knowledge here.

Ms Amy O'Keefe:

I will give another personal anecdote. The Senator spoke about exclusion and expulsion. Recently, I worked with a young girl who is the oldest pupil I have worked with. Usually, I am in with the little ones. I met her family. She had been expelled for what was termed "challenging behaviour" but what I like to term "distress response behaviours", which is responding in a distressed manner to something. This girl communicated primarily through Lámh and uses an AAC device now. She is such a chatterbox. She loves to tell people about her weekend and she talks to her teacher and peers.

I met the family and we chatted a little about whether they noticed a pattern in her responding this way. It usually occurred on Monday mornings. I gathered some further information on her circumstances and it turned out that her attempts at communicating about her weekend were not being acknowledged by her teacher. In a process of elimination, I discovered that she needed just a simple acknowledgement, for example, saying, "I know you have lots to tell me but I am really busy this morning, so we will do this first and then you can tell me about your weekend". I worked with her for a year. I also worked with her on July provision and I never had an experience where she had a distressed response to interactions with me. This is because I would tell her we were busy because we first had to practice our community skills before going out with Nana and we had to be ready on time but when we were in the car with Nana she could tell me all about her weekend. She was not being acknowledged at all in the school. Her attempts at communication were not being acknowledged. Simply by acknowledging her and helping her to understand that we were going to talk about it later, she had no distress response behaviours at all.

She is now in a school and it is amazing that she is so happy. This was all she wanted. We had a great time together but she would always say that her friend would go on the school bus. I would tell her that I understood and that we would be on the school bus soon but we were just waiting for the new school to open. She is fully included and is the only girl in her class. She is the queen bee.

Mary Seery Kearney (Fine Gael)
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That almost points towards a need for a systemic change.

Ms Amy O'Keefe:

Absolutely.

Mary Seery Kearney (Fine Gael)
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There needs to be a change in the language used from one of "challenging behaviour" to "distress response". The term "challenging behaviour" sends me into a red zone.

Ms Amy O'Keefe:

Yes, for whom is it challenging?

Mary Seery Kearney (Fine Gael)
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Yes, exactly. It is so disrespectful.

Ms Amy O'Keefe:

That relates to the systemic issue to which the Senator referred. Having been a teacher, I know that teachers can be very busy, but it only takes a second to say, "I know you really want to talk but we will do that in a little while". If the person needs visuals to support that, the teacher can say, "We will do our five-minute meeting in the morning with our class first and then you can tell me all about your weekend".

It is a matter of having that neuro-affirmative society. Where behaviour analysts can be involved - I mentioned the issue of smoking earlier - is in the area of shaping a behaviour. We are trying to shape the behaviours of our society to be more neuro-affirming. Maybe we will shape up to having a totally neuro-affirming Penneys. While I love Penneys, it is overwhelming. However, we will not expect to go from the typical Penneys stores to neuro-affirming Penneys stores. We will do this gradually, perhaps on one day per week and then on two days per week. We will shape up. The thing is it will be a long process. Practising being neuro-affirmative is not an end goal and it is not a destination. It is a journey and everyone needs to be involved because there will always be new information and new knowledge regarding different neurotypes and distress responses. We can be involved in shaping that by setting the organisational behaviour management in our hub, behaviour analysis.

We can be involved in creating a task analysis for a store. We can provide the broken down steps that need to be followed to become a neuro-affirming shop, as well as to become more inclusive of people who have different abilities or disabilities. We are so technical. When we are defining a behaviour it has to be something that all of this in this room can read and agree that we know exactly what I we are looking at because it is described so accurately and objectively. We have a technology that can be applied to better society. B.F. Skinner wrote an entire book on how behaviour analysis-----

Mary Seery Kearney (Fine Gael)
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On operant conditioning.

Ms Amy O'Keefe:

-----and behaviourism can be used. He had his flaws. He should have listened to Noam Chomsky because relational frame theory is now very much a combination of Noam Chomsky and B.F. Skinner. I am getting into special interests here. Skinner wrote a whole book about how behaviourism can make for a completely peaceful society. It is so optimistic and wonderful but a whole technology then came out of his philosophy and it can be applied.

Dr. Michelle Kelly:

The Senator also mentioned systemic change and the recognition of the fact that across the board there are so many examples within healthcare and education of instances where individuals are being excluded or restraint is being used in an inappropriate manner. We tend to find that the behaviour support specialist or the behavioural practitioner is called when there is a disaster and the level of fire-fighting has been reached. We practise what is called "contextual behaviour science", which is analysing an environment. It is a matter of how we make an environment conducive to positive outcomes. There is a point to be made about involving behavioural practitioners at an earlier point and analysing the environment. The Senator mentioned universal design. I work in a college and we implement universal design for learning within my modules. However, it is a matter of looking at that from a more universal perspective and analysing how to set up the environment to promote positive outcomes from the outset, and not waiting until disaster strikes and then calling the behavioural practitioner to put out the fire.

Mary Seery Kearney (Fine Gael)
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I have seen it with South Dublin County Council, which creates its playgrounds to ensure they are completely inclusive. The design considers not just the physical challenges for child, such as ensuring swings are appropriate and inclusive for everyone, but also the environment of the child so that he or she is able to slowly enter that play space without being overwhelmed. The level of detail South Dublin County Council goes to is extraordinary and very impressive and behavioural science is behind that.

Dr. Michelle Kelly:

Exactly. We do a lot of work around dementia-inclusive environments as well. We look at how we make environments. As we said, it is not appropriate to just have a shop open for an hour. We need to make those spaces inclusive so that anybody can use them at any point in time. There is a lot of work in behavioural science going on at the back of that.

Mr. Alan Tennyson:

A lot of professional communities bring that systemic perspective. As Ms O'Keefe noted, behavioural science has an outcome focus. There is a focus on empirical measurement of those outcomes and how we go about doing that. Sometimes that is not always possible. We cannot measure everything but that does not mean we should not measure some things. Some issues around engagement, participation and how well a person is doing can be measured. Conversely, one can also measure how not well they are doing, things one might be concerned about and how often they are happening. Those are specialist skills. Behavioural analysis and behavioural psychology bring those specialist skills into interdisciplinary teams. They focus on those outcome measures.

The systemic approach is also reflected in our positive behavioural support position statement where we talk about a tiered system to behavioural support. The bottom tier refers to everyone in a community, for example, a school community, university community or community, and the supports that should be in place at a universal level. We spoke about participation in the playground, for example. It is stepped up, with the top level referring to when someone needs a direct level of support in order to support his or her participation. This is similar to what Dr. Mulhern spoke about.

Mary Seery Kearney (Fine Gael)
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Should there be training in colleges? Should it be a module in teacher training and human resources training? There are issues that we should be mainstreaming in training.

Mr. Alan Tennyson:

Absolutely. It is included in S.I. 367 of the Health Act, which names positive behaviour support as required in HIQA-registered services. Yet, we do not have any regulation of what that positive behaviour support training should look like. Evidently, that is problematic because we cannot assure quality for those who are providing that training. That is something we need to address as a community.

Mary Seery Kearney (Fine Gael)
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Who does Mr. Tennyson think should be providing the regulation? I have worked as a counsellor and psychologist as a member of the Psychological Society of Ireland and professional entities within that. They subscribe to a code of conduct, a code of practice and adherence to ethics. All witnesses have cited the lack of regulation.

I appreciate that CORU needs a role. In the interim, however, who are looking for to bring in regulation?

Dr. Michelle Kelly:

Members of the division of behaviour analysis come under that umbrella and the PSI. As a result, it would be guided by those sort of ethics and by the criteria set down by the PSI.

Mary Seery Kearney (Fine Gael)
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It is important to say that-----

Dr. Michelle Kelly:

It is important.

Mary Seery Kearney (Fine Gael)
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-----because otherwise it sounds like the wild west, particularly when we are having a meeting about the fact that there have been abuses. It is important to address those and say that bona fide practitioners put themselves in an environment where they go to great lengths to ensure that they have ethical standards, supervision, etc. It is important to emphasise that.

Ms Amy O'Keefe:

Previously, ISBA ran a certification board, namely, the Behaviour Analyst Certification Board, BACB. People took that board exam. It was in theory an international organisation. However, it has withdrawn from international and is now just focused on the State because that is really only where it was able to regulate. However, the UK's Society for Behaviour Analysis, SBA, has recently become recognised. A practitioner must be certified by that body. Similarly, we hope to be able to have that system too whereby, in order to practise behaviour analysis in Ireland, a practitioner would need to be registered with ISBA, adhere to the code of conduct and collect CPD credits in order to maintain his or her accreditation. Unless a practitioner maintains his or her accreditation, he or she cannot work in the area. That is also where the regulation comes in. We cannot arbitrarily say that someone is no longer a member of ISBA and therefore cannot practise as a behaviour analyst. In that case, who can be? ISBA could say it has removed this person from its register. We need an authority over us, such as CORU, that will list all our members and their certifications and with which they will be registered. It will also be in a position to state that someone has been practising unethically, has not kept up to date with the CPD requirements or that there have been reports against them. There have to be repercussions in the context of their removal. We can have our code of ethics and we can ostracise colleagues who are not behaving. Until we are regulated, however, it is going to be difficult.

Dr. Michelle Kelly:

That is important, because the practitioners we are talking about have either level 9 or level 10 qualifications. They are qualified either to master's or doctoral level in behaviour analysis. Practitioners are either PSI members or have international accreditation. There is certification. As the Senator said, we want to highlight the fact that it is not the wild west. They have a certain level of education and certification. What we really need is exactly what psychologists need, namely, overall regulation in the field.

Michael Moynihan (Cork North West, Fianna Fail)
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Senator Flynn asked me to clarify a point in her absence. People who understand neurodiversity and so forth have been critical of ABA and PBS. Has society not been listening to those who have invested hugely in the study autism? Is it not taking what they have to say seriously in light of the fact that those therapies are available? I go back to Senator Seery Kearney's point about the level of planning on the part of South Dublin County Council in the context of playgrounds and the awareness about the built environment that is slowly emerging. Is it not really us - the people - who need to be educated?

I return to the point on whether we need a module at teacher training level or whether it would almost be a module in the basics of life. For the acceptance and understanding of the challenges that exist for people who are neurodivergent, it is vital that such a module, whether at primary level or whatever, is brought in. It frightens me, particularly in the context of young children. Parents with young children will reach out to anyone they can in order to try to get help. They are in a very vulnerable position when there are practices within society that are for the ill of society and for the ill of the person who needs support. There is no regulation; we really need to ensure that there is proper regulation. Whether it is the Department or CORU, the very basic thing we need is proper regulation. We are dealing with human beings who are vulnerable, and there is no guidance in place. We would not have someone who has no qualifications performing cancer surgery. There is proper regulation that we do not seem to have. The witnesses might comment on the first point, particularly on the question Senator Flynn asked me to pose.

Mr. Alan Tennyson:

Will the Cathaoirleach please remind me what the question was?

Michael Moynihan (Cork North West, Fianna Fail)
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In the context of ABA and PBS, many people within the sector, for want of a better word, are very much against these therapies. Are they not being taken seriously? Is not enough recognition being taken of their opinions?

Mr. Alan Tennyson:

They should be taken seriously. If harm is caused to a person, they should be taken seriously and they should have the opportunity for redress. All of us firmly believe that. If I can speak from a personal perspective, the need for behaviour support outstripped the availability of qualified people in the field a number of years ago. What happened was, we had an influx of people into the field who claimed that they were doing X, Y and Z but who were not qualified. That may be a reason for some of the reports of harm that are coming through now. We need to address that. Also, we had development of a policy that named PBS as being required and yet we did not have the necessary standards or the people who met those training requirements. People within section 38 and 39 organisations or the HSE did not know who to hire. They then put people into positions who may not have met the standards of supervised practise and training.

Ms Amy O'Keefe:

On whether autistic people not being listened to, I stated earlier that many of us involved in or working in behaviour analysis have had elective behavioural therapy and acceptance and commitment training in order to help ourselves. However we cannot speak positively about our experiences because we are not looked at favourably. Dr. Mulhern and I were mentioned in the announcement relating to the division of behaviour analysis and the autism special interest group, and the PSI retweeted the information. We got death threats from people on Twitter. I was called a disgrace to autistic people and a traitor to my neuro type. I was threatened with bodily harm because of a misconception of what the science is in Ireland and of the fact that sciences evolve. In medicine, for example, the contraceptive pill and reproductive interventions were carried out as experiments on women of colour in America, but we still use the contraceptive pill. Codes of ethics change. Sciences evolve. Behaviour analysis is no different. We are continually learning more and more.

I am constantly learning more about my own brain. We are constantly learning more. The more input and knowledge we have, the more the science evolves. We now know that using hand-over-hand prompting with a child who does not want to do it is not ethical. We know it is not necessary to make someone look at us and sit still just to listen. We do not need to force a child who does not really want to make friends to learn social skills that will allow them to interact with people with whom they do not want to interact. The science has changed.

There are some very unethical practices, focused in the US because it is under a medical model. It is the only thing people can be funded for and the insurance companies set the targets and goals. In the US, there is a culture whereby if goals are not set, there will not be funding. What are the goals and what do they need to look like? The insurance companies need to see progress, and progress for them relates to whether the child or person behaves like a neurotypical person. We do not have those standards in Ireland. In Ireland, we have always strived to create environments for our clients and pupils to access. If a child does not want to make friends at a given time, I am not going to force them to learn how to share and turn-take if they are happy playing by themselves. A year later, they might decide they really like, say, LEGO group and want to go, so I will help them learn how to communicate with their peers in a community of their choosing.

I am getting quite passionate and emotional about this, but it is an emotive subject for me. Our culture is very different and autistic voices are being listened to by the majority of us, but when I question people or try to engage them on what their understanding of behaviour analysis is, it is very much based on someone having read something on a blog from the US. There are advocates who are vocally against systemic ABA in the US, such as Terra Vance, who runs NeuroClastic. She has a boycott-ABA approach in the US, but she also recognises that outside the US there is a very different culture. She has stated that behaviour analysts seem to be the only people being held to account, but also that they are the only people who are listening.

As Senator Seery Kearney said, it is a systemic matter, but our systems are very different from those in the US. Ours have always been person centred and values based. It is a completely different experience the US. They still focus on these normative issues because meeting these goals is how they keep funding for their clients, but we do not have that issue here. That is why I opened my presentation at the division of behaviour analysis conference by saying we have an unprecedented opportunity to make systemic change in Ireland because we are restricted by the same expectations as in the US.

Dr. Michelle Kelly:

The UNCRPD states that all persons with disabilities have a right to their own opinion and to choose. This is a sensitive and controversial topic we are discussing, but we need to recognise that Dr. Mulhern and Ms O’Keefe have a right to their opinions and not to get death threats if they choose to speak positively about their experiences with something. We are listening and we want to hear from the autistic community. The Cathaoirleach asked whether the autistic community is not being listened to. We want to hear the experiences, but we want to ensure those experiences are shared in a manner that is in line with people's human rights such that people will not push back against others sharing their opinions. We all have a right to choose and informed choice is important. People can be informed about a positive behaviour support approach. If they choose not to engage with that, that is absolutely fine. However, the information needs to be available for people to make those choices. That is very much in line with the UNCRPD.

Dr. Teresa Mulhern:

Science, which includes ABA, is falsifiable and open to critique. By having things such as experts-by-experience panels, which are proposed by ISBA, ensuring that the division of behaviour analysis will have an entire panel symposium and keynotes, and including autistic and other neurodivergent voices, it shows we are not just an echo chamber comprising people saying not to listen to certain voices. As Ms O’Keefe said, if you are autistic and happen to advocate for behaviour analysis, that is not a great space to be in. There is a reason other autistic behaviour analysts call it middle earth. We are kind of stuck in this odd space where we are not accepted by the autistic community. I have been told I am self-loathing, that I should just die and so on, but part of why I got into ABA is that I received some form of ABA when I was a child and it was the most affirming support I have ever had. It has got me to a point where I can self-advocate but also give people the tools to advocate for themselves. At its core, that is what ABA is. It gives people the functional skills to advocate for themselves rather have others speak over them.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Dr. Mulhern, Ms O'Keefe, Dr. Kelly and Mr. Tennyson. The continuing discussion is certainly a challenge to society, and while we need to have more discussion on it across the board, it is a societal issue we have to change. As I always say in regard to people with disabilities, we have to challenge the attitude and the culture at all times.

If there is any other information our guests think our committee should consider, they should feel free to share it with us. The more information we have, the better the job we can do.