Joint Committee on Autism debate -
Tuesday, 25 Apr 2023

Autism Policy (Resumed): Discussion.

An Cathaoirleach

I welcome all of our witnesses to our meeting here today. We are joined by Davida Hartman, clinical director, The Adult Autism Practice; Tara O'Donnell, CEO and Jessica Doyle, co-director, Thriving Autistic; Nem Kearns and Cír Doyle, co-founders of Neuro Pride Ireland; and Blessing DaDa, mental health activist. I ask the meeting to note that Blessing has to leave at 12 noon to attend another event, which we will take into consideration. Before we hear from our witnesses, I propose that we publish their opening statements and submissions on the committee's website. Is that agreed? Agreed.

The remit of the joint committee is to consider matters relating to services and supports provided by the State for autistic persons. The committee has considered a broad range of important topics concerning both autistic children and adults alike and at our meeting today we look forward to considering access to assessments and services for adults in greater depth. We are interested in learning more about how we can better support autistic people, who can be sometimes overlooked in the formation of policy, particularly in the case of women and girls. The Adult Autism Practice is interested in the diagnosis of autism while Thriving Autistic provides support to autistic persons. Neuro Pride Ireland are a neuro-divergent-led community that celebrates the neurodivergent community people and its culture. Blessing DaDa centres her medical health advocacy around intersectionality. The committee values our witnesses expertise in the areas of autism and the approach they take to empowering autistic people.

I call Ms Hartman to make her opening statement..

Ms Davida Hartman

Good afternoon. I thank the committee for inviting me to attend today as a representative for The Adult Autism Practice. I am the clinical director of the practice, which I founded in mid-2020.

The core areas of work within The Adult Autism Practice are consultations relating to a possible autistic identity, autism assessments, or as we call them, collaborative identification, training and advocacy. We work within a neurodiversity affirmative paradigm, which means that being autistic is understood not as a disorder, but as a neurotype, which similar to other neurotypes has its own profile of strengths and challenges. It means that autistic ways of being are not pathologised, that autistic culture and identity are respected and celebrated, that we recognise and embody the value in diversity and disabled lives, and that the autistic voice is at the centre of everything we do.

We are a mixed team of more than 60 autistic, otherwise neurodivergent and neurotypical psychologists, support staff and one psychiatrist. Our assessments are collaborative and therapeutic and put the person as the rightful expert in their own experience. We have also designed our processes on universal design principles and, in particular, to suit autistic, neurology and communication preferences.

Several psychologists a month contact us about joining our team which, during a time of significant issues in relation to recruitment and staff retention within the HSE, shows a huge interest in working in new and progressive ways within supportive and kind teams. We provide training in our approach to HSE teams across the country and to all professional psychology training courses nationally. Members of our team, including me, have also written a best-selling adult autism assessment handbook, the first book on the subject ever published.

The practice has worked with roughly 3,500 adults since opening, of whom approximately 2,500 were based in Ireland. Roughly 70% of these were female identifying and they range in age from 18 to 75. The feedback on the approach we take has been overwhelmingly positive. However, it needs to be borne in mind that these are people who can not only afford to pay for a private assessment, although we work hard at keeping costs low, but can also navigate an online application process. The adults we have supported have ranged from doctors, nurses, artists, musicians, writers and university students to those who have struggled to hold down employment in environments that were hostile to their neurology. Most, although not all, of the people have experienced trauma in their lives and have navigated a range of services and many unhelpful misdiagnoses. Many of these people are multiply neurodivergent.

Currently in Ireland there is no pathway to publicly access an adult autism assessment, although a programme is currently being piloted. Being diagnosed late in life has serious and life-threatening implications for this minority group who experience high rates of self-harm, eating disorders, and death by suicide. A core issue as we see it is the potential siloing of adult autism assessments to only core assessment teams. Autistic people are within every service. The line “We don’t deal with autism”, so frequently doled out, is exceptionally unhelpful not only for autistic people who are sent from one waiting list to another, but for the services themselves who could potentially see a reduction in the need for their services if people were correctly identified. We have seen life-changing improvements for people who finally understand their neurology, are linked in with a community of people who understand them and can begin rebuilding their lives with hope around a correct understanding of themselves and, typically, their wider family.

This committee is all too aware of the enormous issue in relation to the backlog of autism assessments for children in this country. It is absolutely vital that we learn from these mistakes or we are going to run into the exact same issues in relation to adults. In that context, we propose that the autistic community needs to be at the centre of all service and policy decisions related to them, with a rights-based approach employed. There is an immediate need for accessible, neurodiversity-affirmative, publicly funded autism assessments. Assessment pathways need to be clear and easily accessible. For people already accessing public services, autistic identification should start in these teams, with all relevant professionals being trained in recognising the autistic experience and supporting people to explore this. Training needs to be provided to all health care and affiliated professionals, with training teams being autistic-led. Autism assessment needs to be a therapeutic, collaborative process, with adults being treated with respect throughout. Services and physical environments need to be universally accessible to all neurotypes. Staff and service managers need to actively and on an ongoing basis combat the rhetoric of deficit around the autistic experience at every level of the service. There needs to be active recruitment of autistic employees across public services. Post-identification support needs to be built in as a core part of assessment services. Finally, there is a need to create working environments where healthcare professionals can feel comfortable disclosing their own neurodivergence.

Ireland is currently world leading in relation to neurodiversity-affirmative knowledge and supports and there is a large network of connected professionals working within this paradigm here. The drafting of a national autism strategy is an important opportunity for this progressive mindset to be brought into Irish public services. I thank the committee for giving me the opportunity to speak today and I look forward to discussing this topic further.

An Cathaoirleach

I now invite Ms O'Donnell-Killen from Thriving Autistic to make her opening statement.

Ms Tara O'Donnell-Killen

Good morning everyone. I wish to sincerely thank the Chairperson, Deputies and Senators for the invitation to speak here today. I am the founder and CEO of Thriving Autistic and I am an autistic psychologist. I am joined today by our co-director and assistant psychologist, Ms Jessica K. Doyle. Thriving Autistic is a unique organisation. We are the world’s first multidisciplinary non-profit comprised entirely of autistic and otherwise neurodivergent psychologists, occupational therapists, psychotherapists, counsellors and coaches.

Many of us are also parents of autistic children. Many of us also hold multiple marginalised identities. This gives us a unique perspective into the lived experience and support needs of autistic people.

Our mission at Thriving Autistic is to empower and promote the human rights of autistic and otherwise neurodivergent people through a transformative shift away from the traditional medical and charity models towards a human rights-based approach. Over the past three years, we have supported over 10,000 adults from Ireland, the UK and beyond through our range of programmes and services. These include: post-identification support services; facilitated peer support meet-ups; return to education programmes; disability advocacy services; workplace advocacy services; workplace well-being programmes; and neurodivergent-affirmative parenting services.

We are also actively working to foster structural transformation in the field of mental health and neurodiversity. Our contributions thus far include: co-authoring the bestselling The Adult Autism Assessment Handbook, published by Jessica Kingsley; participating in the steering committee of the Irish Association for Counselling and Psychotherapy to develop neuro-affirmative continuing professional development, CPD, training; serving on the Psychological Society of Ireland steering committee to establish standards for adult assessment and supports; lecturing to clinical and educational psychologist doctoral trainees at UCD, Trinity College and the University of Limerick, among others; conducting numerous neurodivergent-affirmative trainings for a range of HSE disability and child and adolescent mental health services, CAMHS, teams; providing training and consultations for organisations such as Bord Gáis, Facebook, BeLonG To, the UK Universities Mental Health Advisers Network and Stanford University, USA; creating various online resources, such as a healthcare passport and a workplace accessibility guide; engaging in research projects focused on neurodivergent well-being, both independently and collaboratively; attending and presenting research on neuro-affirmative parenting at the International Society for Autism Research in Stockholm next month, as well as participating in other relevant conferences; and continuously evaluating and adapting the effectiveness of our initiatives and trainings, refining our approach based on feedback and emerging needs in the field.

We envision a world where autistic and otherwise neurodivergent individuals of all races, genders and backgrounds are recognised, respected and valued for their inherent worth and unique perspectives; where autistic people's communication styles, developmental trajectories and individual definitions of what constitutes a "good life" are understood, appreciated and supported; where varying support needs are acknowledged, met and adapted to, recognising that some individuals may excel in certain aspects of life while requiring assistance in others; where accessibility is proactively incorporated into all aspects of our future society, recognising diverse needs and fostering an inclusive environment without the individual needing to request accommodations; and where our future society moves away from the medical and charity models and embraces the social model and a neurodiversity-affirming human rights-based framework that empowers autistic and otherwise neurodivergent individuals to lead fulfilling lives on their own terms.

Our small nation has consistently demonstrated a remarkable influence on the global landscape, championing ground-breaking changes such as marriage equality, the recognition of Irish Travellers as a distinct ethnic group and the repeal of the eighth amendment. We call on the committee to continue this visionary tradition by embracing a human rights-based approach to supporting our autistic citizens.

From the perspective of well-being for autistic adults, we propose that the State take the following actions: invest in autistic-led neurodivergent affirmative human rights-based training for all public sector services; support the development of a neurodivergent affirmative model of assessment and post-identification support that extends throughout an individual's life; and co-design a disability benefit system which reduces the barriers and eliminates the dehumanisation experienced by neurodivergent adults seeking access to supports.

I thank the committee for the opportunity to bring this information to its attention today. I look forward to discussing some of these areas in greater depth.

An Cathaoirleach

I thank the witness and call Nem Kearns and Cír Doyle from Neuro Pride Ireland to make their opening statement.

Nem Kearns

I thank the Cathaoirleach and committee members for the invitation to discuss autism policy. Neuro Pride Ireland is the national disabled persons' organisation representing neurodivergent people from, or living on, the island of Ireland. It was founded as a cross-neurodivergency organisation in response to community need as the majority of neurodivergent people have more than one neurodivergent identity. For example, up to 80% of autistic people also have ADHD. In addition to holding monthly peer support, cultural and social events and an annual festival for our approximately 900 members, we produce educational materials and actively advocate for neurodivergent people’s right to full participation in all aspects of society.

At present, as other witnesses have highlighted, there is no real public pathway to diagnosis for autistic adults in Ireland. Women, LGBTQ+ people, people from migrant and ethnic minority communities and people over the age of 30 are much more likely to have been overlooked for diagnosis in Ireland. This, in turn, creates inequality of access to appropriate supports which negatively impacts all aspects of an autistic person's life. For example, autistic women have a lower average life expectancy than autistic men and face an even higher risk of suicide due in part to their greater difficulty in being recognised as in need of diagnosis and support. Irish data on racial disparities in diagnosis are lacking. However, international trends and the experience of many of our community members indicate that similar biases make it very hard for migrant and ethnic minorities to access diagnosis, putting them at greater risk of misdiagnosis and dismissal.

Introducing universal screening for autism and other neurodivergencies in educational and mental health services would not only greatly improve public health outcomes but would save the State in associated costs and help to address the systemic under-identification of autistic people from overlooked communities. Research shows that formally diagnosed and self-identified autistics experience the same barriers and poor outcomes across all areas of life. However, access to educational support, workplace accommodations and a number of other crucial social and State supports is still largely dependent on being able to afford and access a formal diagnosis.

As most autistic people are neurodivergent in other ways, the lack of services available to provide assessment across a range of neurodivergent traits means most cannot afford to access diagnosis for all their needs and instead have to pick the one that is most urgent. Lack of up-to-date training and persistent myths make it harder to access support. We still hear accounts from parents who are told by their GP that girls cannot get autism and, worryingly frequently, we hear from autistic adults, disproportionately women, who are informed that although they meet the diagnostic criteria during their assessment, their practitioners decided to withhold their diagnosis because they were in a romantic relationship, have children or have completed third level education.

Many GPs, teachers and other professionals have not been given the opportunity to learn from recent leaps in understanding of autism and will find huge benefit from being given the opportunity to receive up-to-date, informed training co-developed and delivered by autistic experts. The lack of understanding and support for the needs of autistic women and marginalised people places us at hugely increased risk throughout our lives. For instance, nine in ten autistic women have survived sexual violence and evidence suggests that ethnic and marginalised autistic people are at increased risk of misdiagnosis, involuntary detention and prescription of inappropriate medications.

Another often overlooked part of our community is autistic people with intellectual disabilities and non- or partially-speaking autistics. Meaningful and supported access to augmentative and alternative communication, AAC, including support training to families and support services, is absolutely fundamental in empowering all autistic people to realise their right to live independently and fully participate in all aspects of society. We are concerned that non- or minimally-speaking autistic people, particularly those in institutional care or under wardship who have never been given the opportunity to access robust AAC, may face significant barriers in exercising their rights under the UN Convention on the Rights of Persons with Disability, CRPD, and the Assisted Decision-Making (Capacity) Act. We are also concerned about widespread reports of AAC being used as a reward that needs to be earned through good behaviour. This is in direct conflict with the rights of disabled people.

We are, however, moving in the right direction as a country, as shown by the enactment of the Assisted Decision-Making (Capacity) Act. We also welcome the news that guidelines to eliminate the use of traumatising practices of restraint and seclusion in schools are being developed. We hope that this heralds the beginning of a move away from these and other harmful behavioural interventions across Ireland and that the views and experiences of disabled people will be at the centre of new approaches built on a foundation of human rights and dignity. As part of the roll-out of these guidelines, it is essential that teachers and support workers are equipped with funded training on neuro-affirmative evidence-based alternatives to coercive techniques that we are thankfully leaving behind.

Autistic and otherwise neurodivergent people pay a heavy price, sometimes with our lives, when we are expected to mask our neurodivergent traits to fit in to non-accepting environments. Something we hear time and again from our new Neuro Pride Ireland members, whether they are in their teens or past retirement age, is that our community is the first place in their lives they have felt able to be truly themselves. Many cry or are overwhelmed at their first experience of something every person should experience by right – being accepted and valued for who they are.

We welcome the new rights-based approaches informed by better understandings being embraced by educators, healthcare practitioners and others, including members of this committee and other legislators. We can no longer seek to impose social conformity but must instead aim to embrace and support the diversity and rich variety of the society we live in, including that of our autistic community.

An Cathaoirleach

Thank you, Nem. I call Blessing Dada, a mental health advocate, to make her opening statement.

Ms Blessing Dada

I thank the committee for having me. I especially thank Senator Flynn who invited me to speak at this meeting.

I am a first generation black-Irish woman, born to immigrant parents, and I am a disabled black woman living in Ireland. I have endured marginalisation from my earliest memory. I have had to fight to be heard every moment of every day. There has not been an experience where I have not been impacted by intersectionality.

Intersectionality is the acknowledgement that everyone has multifaceted lives and that we have our own unique experiences of privilege, discrimination and oppression, and we must consider absolutely everything and anything that can marginalise people via gender, race, class, sexual orientation, physical ability, etc. The term was coined by an educator and author named Kimberlé Crenshaw around 32 years ago. It describes that an individual can experience various identities simultaneously. It is necessary that we use this framework in every single social justice-related topic to make sure we are inclusive of everyone and the perspectives that are often left out due to the status quo.

I am asking people to see autistic people through a social model as being neurologically diverse. There is nothing to fix because there is nothing wrong with being autistic. There is nothing wrong with me and the community. Autism is not a disorder or a disease but a part of natural diversity.

Autism is just a neurological variation. We want to be defined by our strengths, in whatever way that looks like, and not by a medical pathology. We seek not to come from a point of opposites but to change the narrative and say that we are neurodiverse and we have a place in this world. Sometimes people from non-white races who demonstrate classic autism traits might be diagnosed with behavioural or mental health difficulties, which among other aspects of the healthcare system experience medical racism. Sometimes other cultures may not have an accurate understanding of autism, which can lead to families not picking up the signs that their child might need additional support. In addition, if English is not a parent's first language, that can make achieving a diagnosis a little more difficult. This is very common for children who are born in Ireland to immigrant parents and go through a process called parentification.

I see autism as a secondary characteristic because society sees me as Black before anything else. The stereotypes and discrimination black individuals already face are dangerous as it is but this is multiplied when they have additional needs that have been neglected. Misconceptions from cultural perceptions can lead to a lack of diagnosis and quality care, and especially without proper diagnosis, autistic black individuals may be negatively interpreted as being different, which may lead to unwelcoming environments and which is why anti-racism is a very important allyship in personal and professional life. When we grow up in a world where the metrics of success throughout society highlights our weaknesses rather than our strengths, it can cause a sense of inadequacy that can lead to anxiety, depression, and mental illnesses. Minorities, including the Traveller community, are underestimated, underdiagnosed and underrepresented. We need to talk about how research can be eurocentric and needs to take into account the experience of interdependent cultures, barriers to conversation and move towards a discussion of true inclusion and nuance.

To improve the experiences of non-speaking people, those living with poor mobility, black and brown people and the Traveller community, especially people who identify as women, we have to collectively raise our voices, tell our stories and understand the importance of advocating for our care. Overall, I would love an Ireland where people feel like they can go where they are celebrated and not where they are tolerated.

An Cathaoirleach

I thank Ms Dada very much. I am conscious of the fact she has another meeting at 12 noon. I will ask committee members to ask any questions they have for her in particular. We will go according to the question slots.

Deputy Pauline Tully

I do not have any specific questions for Ms Dada; I have a lot of general questions that would apply to everyone. Ms Dada identified as being the daughter of immigrants and being first generation black Irish, and said she experienced a lot of racism because of her colour but being autistic also made things more complicated. How was she identified as autistic? What pathway did she use? We have already said at the committee that there is no public pathway to being assessed as autistic. I presume she always knew she was autistic but how was she assessed?

Ms Blessing Dada

I grew up with a lot of adverse childhood experiences and I lived with mental illness so it took a while for my autism to be picked up because of that experience.

I know from talking to other people in the black community that they struggle to get a diagnosis for themselves because many do not necessarily see themselves in that conversation and there is a lack of research on ethnic minority communities. I got my diagnosis through learning what autism looks like in other black folks who were diagnosed before me.

When seeking a diagnosis, many people experience parentification, which is when young people experience the reverse role of having to be the adult in themselves, rather than having the support of the parent, due to many different factors. Unfortunately, many people have to wait until they turn 18 to take control of their lives when it comes to making decisions. Unfortunately, at the moment in Ireland, to get a diagnosis you have to go private. That is one of many things that come up, especially with people from a migrant community or from direct provision. Many of them do not have the support of a parent who is able to answer that section of the paperwork. Sometimes, people are held back in that area. I hope that by sharing my lived experiences, the lid on that conversation can be lifted.

Deputy Pauline Tully

I commend Ms Dada on that. Are there supports or is it very difficult to access them, even after being identified as autistic?

Ms Blessing Dada

In terms of support, if I did not have the likes of the Autistic Art Club or Neuro Pride Ireland, I would be very lost, to be honest. Before I knew of the two groups in Ireland, I connected more with accessing resources on UK or US websites because the diversity of black Irish people is very new in Ireland. When I was new to my diagnosis, that was when I was reaching for supports in that area.

The important thing when we talk about anti-racism and allyship is, as I highlighted before, intersectionality. Allyship and anti-racism are not on their own, but go hand in hand with the LGBT and trans communities and people with mental illnesses. Support for autism on its own is hard but when you add in the intersectional perspective, it is easier to manage with the support because you are around like-minded people striving for the same goal of making sure people are included in conversations like this and are heard.

An Cathaoirleach

I call on Senator Black, who is standing in for Senator Flynn.

Senator Frances Black

I am here to represent my colleague, Senator Flynn, who could not be here today. I thank the witnesses for their precise presentations. I am the Chair of the Sub-Committee on Mental Health and am very aware that people from migrant and ethnic minority communities and women often have very different experiences of treatment and support due to their identify. Could Ms Dada give us any recommendations on addressing inequalities in access to autism diagnoses and support for people historically underserved by these services?

I will also ask my second question now if that is okay. In Ms Dada's view, how important is it that we collect data on gender, sexuality, ethnicity, age, and other factors recommended by the Committee on the Rights of Persons with Disabilities and how best can this be achieved?

Ms Blessing Dada

I am sorry; will the Senator repeat the first question?

Senator Frances Black

Does Ms Dada have any recommendations on how we can address the inequalities in access to autism diagnoses and support for people who, historically, have been underserved by these services?

Ms Blessing Dada

I always say to people to listen to those people with the lived experiences. When it comes to research I would definitely recommend looking at organisations such AsIAm, where there is also autism training, and Neuro Pride Ireland. Those who are autistic need to be the voices in leading conversations like this. People who have proximity to autistic people are also important in the conversations but those most definitely be centred on those with lived experiences. Taking their lead is very important, as is allying with them and having conversations like this. I thank Nem Kearns for encouraging me to speak here and put my voice into spaces like this where it is not often seen or heard. We must always be conscious of centring those who the most oppressed and marginalised in our society and being very observant about what voices are not at the table. We must be very intentional in inviting some voices like that. That would be my main advice that could be used in any aspect of any social justice issue.

Senator Frances Black

I thank Ms Dada.

Senator Mark Wall

I thank Ms Dada for her presentation. I would like to touch on her schooling and how it affected her diagnosis or lack thereof. Did she get any help when going through primary school or secondary school?

Ms Blessing Dada

On my personal experiences of going through school, things are a bit different now than they were then given that since 2020, there have been conversations around Black Lives Matter and there is also greater awareness now of ethnic minority communities, mental illnesses and neurodivergence. Back then, there was little or no conversation around that. I was definitely missed with regard to getting supports in school. There was an experience of adultification, which is a term that explains how young black children are perceived and treated more as adults rather than experiencing the innocence of being a child and of childhood. Back then, I was not always treated as a young black woman and that has had an impact on my mental health. I did not show any of the typical traits of autism. A lot of people are still educated that autism is something only young white boys go through. There were definitely no supports then. I can only hope that through conversations such as this one, things will get better for other young children who are going through the same system I went through.

Deputy Pat Buckley

I do not have a question but I have an observation. I thank Ms Dada for telling her own story. That is not easy.

This committee is concerned with learning and also listening to witnesses so members can be more informed about what is happening. I understand where Ms Dada is coming from concerning family members not accepting her bona fides and that it is necessary to wait so long to even get an opportunity to get a diagnosis. We have heard from other witnesses that this is one of the biggest problems we have, especially with adult autism. I just wanted to make that point and thank Ms Dada very much for telling her story.

Deputy Ruairí Ó Murchú

In fairness, a significant number of questions have been asked about what can be done to improve these circumstances. This is part of autistic people being the experts and, therefore, giving testimony about their own lives and circumstances, as they perceive them. I ask Ms Dada to go into more detail about that. We all get the idea that the assessment system is not what it should be and that the therapies that should exist do not. Ms Dada has thrown into the mix, for want of a better term, the aspect of harder-to-reach communities, as well as everything else she referred to.

Ms Dada spoke about parentification. We all know the problem faced by people aged over 18, whatever problems there are with children's services, is that adult services can be non-existent. Ms Dada also spoke about using the NGO sector as her means of getting information and whatever help and support she has got. This brings us back to the question Senator Black asked regarding what can be done to improve the situation. What can be done in circumstances where families do not necessarily buy that the problem is autism, do not recognise or see it, and, therefore, are not even looking for the interventions, as difficult as it might be to get them?

Ms Blessing Dada

Was that the question?

Deputy Ruairí Ó Murchú

Yes, I am very good at confusing people. What can be done to improve the situation where parents do not necessarily buy in to the fact that someone may have autism? Whatever about how difficult it is to access services, what can people do when they are not getting familial buy-in? Obviously, we would like the school and whatever else to kick into action but there will be the issue of parental rights and certain difficulties. I would like Ms Dada to tell us about her own experience and what could have been done better in her life to facilitate her at an earlier stage.

Ms Blessing Dada

It is definitely a hard question to answer because there is no one-shoe-fits-all answer. From my experience, representation is very important and because I did not have that growing up, I had the choice of becoming that representative or just waiting for the next person to become one. That was the motivation behind my activism when I began around ten years ago.

When it comes to parents, listening to autistic adults is important because people still have this notion that people grow out of autism. I always tell people that you are born autistic and it is not something that needs to be cured or is going to change; it is just how it is going to be. I suggest even just listening to the stories of autistic adults and learning from them because we were once children. By sharing my story, especially with any black parents who may have young autistic children, I hope my speaking out will enable them to know that autism does not discriminate, anybody can be autistic and it is not a bad thing at all.

Deputy Ruairí Ó Murchú

Gabhaim buíochas le Ms Dada.

An Cathaoirleach

I thank Ms Dada. The event she will be attending is being run by the Mental Health Commission. I thank her for being such an advocate. It is important to have people who stand up to be advocates for their communities. I say well done and thank for her for attending the committee, engaging with the members and answering their questions. I thank everybody for allowing me 20 minutes for Ms Dada to answer questions. We will return to our speaking slot to allow questions to the other witnesses.

Deputy Pauline Tully

I thank the witnesses for attending, and for their presentations. Some of the information is quite concerning, especially that covered by Nem in their opening statement. I did not get the opportunity to read the statement before they delivered it. I will certainly be going back over the details because there is a lot of information in there.

We have to recognise that things are improving, albeit at a slow rate. We are coming from a low base. As I mentioned to Ms Dada, and as all of the witnesses have mentioned, there is no public pathway to adult assessment for autism. That has proven to be a huge problem. Some of the witnesses have indicated a pilot programme. Do they know where that is at, or can they even give an indication? I am concerned when I hear the words, "pilot programme". Ireland is famous for launching pilot programmes that remain pilots for many years, but which never progress. We never evaluate, assess or use them to put the services in place. Because there is no public pathway, most people have to go private. What is the cost of that? As Nem pointed out, 85% of autistic adults are either unemployed of underemployed. Paying has to be an issue. I meet people all of the time who tell me they have only been identified as autistic in the previous year or two. The reason is often that they are in conversation with another person who may be autistic, who say something that assumes they are autistic. They will deny it, but think about it later and go to be assessed. It is a relief because they understand why they felt differently about things, or acted in certain ways. All of the organisations represented here give different types of support to autistic people. I will ask the same question I asked Ms Dada. Are there supports for people who cannot afford to pay for them? Is there any alternative? I recognise the importance of peer support being offered through the respective organisations. When it comes to professional support, does it have to be paid for? Is that the only way it can be accessed? Do the organisations all have a nationwide reach, so that people in every part of this country can access support if they need it? How easy is it to find the supports they need in the community?

Ms Davida Hartman

In terms of cost, that can vary massively. The Adult Autism Practice is a private organisation. Our costs are not low. It is €850 for the full assessment with the official diagnosis, which people need to access services. This is the issue. We also support self-identification, and a lot of people in the autistic community would self-identify. We support those people with an initial consultation. However, the official diagnosis, which is often needed to access services and workplace accommodations, costs €850 with us. That is very low compared to other services. It would typically cost up to €2,000 or €2,500, and even more. There is literally no other pathway to access that in Ireland. If people are already within mental health services they might sometimes be lucky enough, if I can put it like that, to meet a professional who will support them with an assessment. More often than not they will be told that autism assessments are not offered as part of those services. Even if somebody says he or she thinks he or she is autistic and gives the reasons, he or she will be told that assessment is not done. Such people will be referred out of public services, and into private services.

We are talking about people who would be very well-known, who might have been seeing a therapist, psychiatrist, or psychologist for many months, but were told they had to go private for the assessment, which is completely unnecessary. I apologise, what was the Deputy's other question?

Deputy Pauline Tully

When a person gets the diagnosis, what supports are available? Again, does he or she have to pay privately for a support they wish to access?

Ms Davida Hartman

Does Ms O'Donnell-Killen want to take that question?

Ms Tara O'Donnell-Killen

In Thriving Autistic, we are all, as I said, neurodivergent and we are all professionals. We are psychologists and occupational therapists etc. We have some psychology clinics, actually pioneered by the Adult Autism Practice. It funds a one-to-one session with an autistic psychologist or occupational therapist who is one of our people. It provides us with some funding from everyone they diagnose and then we support that person and give them one session free of charge. That funds our professional to do the session. We all offer sessions on a donation basis. We have groups which we run for people who have just been identified whether that has been professionally or that they have realised within themselves. We provide six-week and monthly support groups as well which are facilitated by psychologists or occupational therapist professionals. We do not have Government funding for that so we are obviously limited in our capacity. On the plus side, we are entirely remote and because we are an online-based service, anyone can access it if they have access to an Internet connection and a device.

Deputy Pauline Tully

Regarding Government funding, does Thriving Autistic get Government funding at all towards anything that it-----?

Ms Tara O'Donnell-Killen

Not yet. I suppose we are new. This is our third year. We have hit the ground running providing services. We have not applied for core funding yet. That is on our roadmap for this year.

Ms Davida Hartman

Publicly, there is no pathway to supports. There is nothing.

Ms Davida Hartman: Publicly, there is no ??

Ms Tara O'Donnell-Killen

We have HSE teams and private clinics referring people to us on a daily basis. I was going through our figures last year and we had 8,000 email support requests.

An Cathaoirleach

I will let in Nem Kearns there. They are looking to get in online.

Nem Kearns

I will chime in on some of that and answer from our perspective. I agree that there are no public services for adults. As we have discussed, there are no diagnostic services and if you are diagnosed, there is nothing after that. There are cross-disability things that a formal diagnoses can help you access but there are no guarantees. These could be accommodations in the workplace, in third level education or possibly when applying for disability allowance or something like that. However, there are no autistic supports beyond residential and disempowering, that is, institutional care, and institutional residential support. There is nothing to support autistic people in their communities and help them to live their best lives. Neuro Pride Ireland is a national organisation but we are entirely unfunded and run by disabled volunteers who are all multiply neurodivergent. The majority of us are also disabled in other ways. While we have built a large community, it is the community which is providing support to the community. We host community spaces across a number of social media platforms where members can speak on an ongoing basis and form subcommunities or groups for neurodivergent professionals, for neurodivergence at third level education, and LGBTQ+ neurodivergent people, but those are the autistic and otherwise neurodivergent people supporting each other because there is nobody else to do so. Thriving Autistic posts diagnostic supports and counselling and their peer groups are a massive boon to the community. I really cannot emphasise enough how potentially life-saving it is. Our community members talk to us and to one another about the things that helped them and that is one thing that has come up a lot.

As far as I am aware, the Adult Autism Practice's prices are on the lower end. They are possibly the lowest I have heard of when it comes to private diagnosis for adults. The minimum cost per assessment is €850.

I want to highlight that, as has been mentioned before, most autistic people are neurodivergent in some other way. It is impossible to get an adult diagnosis and assessment for more than one neurodivergency. People have to find separate private providers. There is beginning to be some public provision and referral for ADHD diagnosis, which is great because ADHD is not taken seriously enough in my opinion and from my experience with supporting neurodivergent adults. It leads to lower life expectancy, higher rates of addiction, huge mental health problems and suicide if left unsupported. The majority of ADHD adults are unsupported and the majority of autistic people also have ADHD. I want to emphasise that. It is great to see that there is some public provision but if people are trying to get support, we are not just talking about them having to pay for one assessment; they then have to go and pay the same for another assessment for another neurodivergency. A significant barrier is that because of the issues with child diagnosis and the assessment of needs, many autistic parents are prioritising paying for their children and are unable to access a diagnosis for themselves. If they are able to save the money, they are putting it towards their children and trying to get them the support they need because they are parents, and also because it is so urgent that children get the support that they need as soon as possible. Those are other factors to keep in mind.

I want to touch briefly on Senator Black's question regarding disaggregated data. We believe it is absolutely crucial, along the lines recommended by the CRPD committee. We know there is inequality across the system and there are gaps in knowledge, skill and provision, but we will not be able to fix and address those and make the system more equal until we can measure what we are not seeing and where the work needs to be done. The collection of robust and disaggregated data is very much part of that.

An Cathaoirleach

I think Cír Doyle wanted to come in there.

Cír Doyle

In terms of services, there are some services that technically autistic people can apply to for help, like different employment services. Despite our organisation having nearly 900 members and even though I am involved in various other autistic groups, I have never heard of somebody successfully availing of such services. We are talking about a lack of diagnosis unless people can afford it. I am one of the rare people in Ireland who was diagnosed as an adult publicly. To do so is very difficult and taxing. You essentially have to be a suicide risk before it is considered. I was previously diagnosed with borderline personality disorder, BPD, a diagnosis that I still stand by and a condition I still believe I have. However, I am aware that many autistic people in Ireland, especially autistic women, are diagnosed with BPD incorrectly. Borderline personality disorder shares a lot of traits with autism, the main difference being that autistic traits present from childhood whereas BPD traits are developed later in life. I had to go toe-to-toe with people and fight to make the point that as much as I valued the BPD diagnosis, I thought there was also an autistic diagnosis.

It took a year of fighting my own corner before I was able to be diagnosed. This is not a place people want to be when they are already fighting against all the gremlins in their brain on a daily basis merely to survive. To add in an extra fight against a service that is supposed to be helping someone is counterintuitive. I would never have been able to afford this privately. As Nem has already mentioned, like many other people I have to put my child first. Any money will always go towards my child's healthcare over my healthcare. It is not right that we are putting autistic parents in the position of having to decide who is more important right now. Assessments are not availably publicly for parents and the assessment waits are too long for the children. This is all I have to say on it.

Senator Frances Black

It is shocking to think there is no public pathway to diagnosis. It is very shocking, to be honest. I am sorry to say I was not aware of it. I would have presumed there was a public pathway for people to get diagnosed. I want to come back to Nem very briefly on the recommendations. I stepped out for a while and perhaps Nem touched on the recommendations on how we can address the inequalities of access to autism diagnosis for ethnic minority groups and women. If they do not mind I ask them to say something on this. I have many other questions that I hope I get a chance to ask.

Nem Kearns

I thank Senator Black for the question. It will need a multipronged approach. Part of it is about addressing the lack of public services. Ethnic minorities and migrant communities are statistically more likely to live in financial precarity or poverty, as are women. This is one piece of the puzzle. There are fantastic resources being developed by Thriving Autistic and the Adult Autism Practice in particular. A handbook was recently published. Part of what it addresses is robust neuroaffirmative assessment of women and other marginalised people.

A key part of this across the board is centring autistic people ourselves and centring the voices and experience of autistic people, particularly prioritising the input of disabled persons organisations. It is something we always speak about but we are always speaking about it for reason. It is given priority in the Convention on the Rights of Persons with Disabilities for a reason. It really is fundamental and foundational. By doing so it brings together the expertise needed. There are amazing autistic professionals who work in diagnostic services and support services. We are not just, for want of a better word, patients. We are the experts by experience and in every other way. We are a wide and varied community. Together we can identify those parts of the puzzle that must come together.

Certainly another large part must be appropriate and correct up-to-date neuroaffirmative training for professionals. GPs may not have been given proper training on this or they have not been given the opportunity to learn about the progress since they left their studies.

There was a view that only boys were autistic. Many people learned that in college. If they have not been given the opportunity to access better and more up-to-date training, they will be left with that impression and bias. It is not their fault, so to speak. In addition, a special education teacher does not technically need to have any expertise whatsoever, specifically around autism or any other disability. Many teachers are going above and beyond and paying out of their own pocket for the training they need. Our teachers are being asked to do more and more with less and less. The State needs to step up and co-develop or identify the existing autistic-led professional training - Autism Cork, for example, provides accredited training – and then fund, provide and roll-out that training to front-line people. If the people who are able to refer people on to the diagnosticians do not know what to look for and who to refer, just focusing on the diagnostic process itself will not solve the issue, if that makes sense. It needs to be a whole-society approach.

Senator Frances Black

I chair the Joint Sub-Committee on Mental Health. We have had witnesses in who have repeatedly highlighted the need for better training for teachers, doctors and other professionals. At one point, I met with a gorgeous young man who had been diagnosed with autism. This was a private meeting; he met with me personally. He spoke about how, when he became stressed or anxious, he would get very frustrated and might lash out. He would never physically hurt anybody but he might get frustrated in a room or something like that. The police were called in a few instances. In one incident, he was treated quite aggressively and in another he was shown great compassion and empathy. They were so different. How can we ensure appropriate training is delivered to those who need it? It is important this is prioritised, whether it is a teacher, doctor, garda or others. How do we prioritise that? It is absolutely vital. I do not know who wishes to answer that question.

Ms Davida Hartman

It is funny but in Ireland, as members are hearing today, we are in the unique position of having a great many autistic-led organisations that are already providing world-class training in this area. How do we prioritise it? At a Government level, I do not know. However, the training, the people to train and the programmes are there. It is just a matter of having the willingness to roll that out.

I agree with everything Nem said. Autistic people are not being recognised. The issues Nem raised about GPs and other professionals having outdated views of the autistic experience is very much what we hear every single day. Many people coming to the practice would say they think they are autistic and asked their GP and various other people about it but all those professionals would have said they could not be autistic, that because they are married, have kids and are doing okay, they are not autistic, even if they tick all the boxes. There are very outdated views out there among professionals who actually really want to help.

Even within mental health services, there is also the issue of people having outdated views of the autistic experience, for sure, but there are also issues around willingness within services to do the autism assessments. There are issues with services saying they do not do autism assessments and that needs to be done somewhere else, even when the knowledge is there. That is another issue. It is not just about training. It is about training but it is also about more of a willingness within services to do that work and not silo into various areas.

Ms Tara O'Donnell-Killen

I agree completely.

I would also like to add that one specific area that gets missed, and in which we could really do with some training, is maternity care. There is a large number of autistic women, and autistic pregnant and birthing people, and they are being missed in maternity care. There is no expertise there to support them at such a crucial time in life, particularly for a first child. Obviously, it is such a sensory experience anyhow, and people are intimately in your space, so it is a real touchpoint for a huge number of pregnant people, birthing people and women and can have a massively traumatic effect and impact on their journey and introduction into parenting. I bring attention to that as a point. If we are going to be looking at training in the services, this is a touchpoint that is being missed. Another huge piece is end-of-life care, particularly if we are looking at people who are going into, say, hospices, or places where people are to be cared for. There can be a lot of distress and discomfort around it not even being understood that they have sensory needs and preferences. This could be helped by more compassion and sensitivity and even just to provide the training. We know how wonderful, for instance, hospice care is. Our professionals are so wonderful and so caring. I have experienced that quite a few times there. However, these professionals do not have any understanding of autism, autistic people or those specific needs. It would not actually take a massive amount because the will and the compassion is there in these cases; it is just that little bit of extra understanding.

Cír Doyle

Training is really important. We were talking about teachers. There needs to be some core funding put aside for in-service days for training teachers when it comes to autistic needs. However, it needs to be neuro-affirmative training. As everybody has already established, there is already so much good training out there like the Thrive programme by AUsome Training. If we are trying to move away from the use of seclusion and restraints in special education schools, we need to make sure that teachers are equipped with different methods to use and with different understandings. Moreover, we need training around the use of augmentative and alternative communication, AAC, and that goes for schools but also in the wider public sphere. Cases have been brought to me many times of people who have been dismissed because they are using an AAC app. It is just not good enough. I am a part-time AAC user and it is not okay to ring up a service like any of the Departments and to be told to use your "real" voice. That is not good enough. Neither is being prevented from engaging in therapy and counselling or whatever, unless you use your real voice. My AAC app is my real voice, just as if you are texting a friend, it is your real voice. It may not be what you are used to but this is why we need better training when it comes to alternative communication. All communication is valid and whether that is for teachers, doctors or whosoever to learn, we need to establish that alternative communication is valid. Although somebody may not use AAC 100% of the time, that is okay. When they do use it, they are using it because they need it. AAC users are not exclusively children and are not exclusively non-speaking. It could be due to tiredness, sensory overwhelmedness or health. There are numerous conditions and situations where a person may have to use alternative communication and that is valid. We need training around that.

Nem Kearns

I will be as quick as I can. I wanted to mention that there are wider things we can do. Neuro-affirmative training is not only for the practitioners; it helps autistic young people, or newly-diagnosed autistic people, to learn their own best coping skills.

For example, Senator Black referred to a young man who becomes overwhelmed. I also become overwhelmed. However, I have spoken to autistic people and I have learned much more from the autistic community than I have learned from anybody else. I can now recognise what is happening. I have read research that refers to most of our environments, in particular public environments like schools, hospitals and places like this. Ms O'Donnell-Killen referred to end-of-life care. Autistic people are overrepresented in domestic violence and homelessness shelters.

Many of those support services are sensory hell for many autistic people. It is physically painful and overwhelming. That is not greatly understood. It is called sensory sensitivity, which suggests that these environments irritate us. It does not irritate me; it physically hurts a lot to be forced to be in an environment like a hospital where I am in constant pain due to the sensory environment. If you imagine having an ongoing toothache in an environment with flickering lights, you can imagine how you would lose your ability to deal with other stressors and how your ability to communicate your thoughts, feelings and needs would be greatly impaired and reduced. If we incorporate universal design and make our society more accommodating and inclusive of all needs and neurotypes, it will be of great benefit.

Another thing which feeds into this is the shocking rate of refusal of child and adolescent mental health services, CAMHS, to accept children and young people who have an autism diagnosis. These services say that they do not do autism. No matter what mental health supports that young person needs, CAMHS will not support them. In my view, that is discrimination on the basis of diagnosis. It not only leaves those young people extremely vulnerable to suicide, which is at epidemic proportions with autistic youth, but also makes it more difficult for them to learn how to cope, regulate, work through crisis and communicate their needs. We are not equipping them for their adult life. We are just hoping that they will survive their youth. We are kicking the problem down the road. We need to stop this idea of siloing off autistic people to separate schools, services and everything else. We need to stop pretending that autism is a problem, to accept that autistic people are part of our communities and our society, and to build our society to include them.

Ms Jessica Doyle

I am probably repeating what others have said. Rather than thinking of specific areas where autistic people are present, it is probably more important to think that autistic people are present in all areas and in all contexts of life. We are everywhere. We think a great deal about transition, and transitioning from primary school to secondary school, or from secondary school out to college. We also need to think about all of the other transitions, such as becoming a parent, going into work or going into retirement. It is very important that we think about all of the different transitions in a full lifespan - which may not be the right word - or throughout life.

On the sensory overload issue, it is important to build more awareness that autistic people have different perceptions from those of neurotypical people. While neurotypical people might habituate to sensory environments and get used to them over time, autistic people do not necessarily do that. These environments can be of the same intensity and pain over time. There is a need to build more awareness and acceptance of the difference, which is just as valid, in a neuro-affirmative way.

Senator Frances Black

I thank Ms Doyle.

An Cathaoirleach

Very good. I invite Ms Hartman to come in briefly for 30 seconds, please, as I am conscious of the time.

Ms Davida Hartman

I want to return very quickly to the training aspect. It is very important to acknowledge not just that there are no adult autism assessments done publicly, but also that there is a significant issue around adult autism assessments done inappropriately, which can be quite traumatising.

It is not just a matter of training people up in recognising autistic people. There is a great need for training in appropriate, non-traumatising adult autism assessments, which is a new area but that will be vital in future.

An Cathaoirleach

I thank Ms Hartman. The transition from primary school to secondary level and then from there to third level was mentioned. We have a group of students from Cnoc Mhuire Secondary School, County Longford, and they will attest to this. We can understand the difficulty for someone on the autism spectrum moving between schools. I met people from a school at an enterprise competition recently and their enterprise proposal was a booklet for sixth-class students in primary schools to help them transition into secondary school. It was possible to tick boxes to allow pupils to indicate what school they had decided to go to. When they went to the school, then, they had a little booklet to which they could refer to help them. Perhaps we could look at this approach. Especially given the way technology is now, we should be able to use it to help those on the autism spectrum going into secondary school or on to third-level education. Some witnesses who appeared before the committee, I think from Dublin City University, DCU, were working on an app that could be used to help students going on to either secondary or third-level education or both.

Deputy Pat Buckley

I congratulate all the witnesses on this very interesting meeting. We have heard we have the world's first multidisciplinary non-profit organisation and a world first on books published. An awful lot of work has been done in this regard. Just listening to all the witnesses speaking, it is evident that the problems are all being identified but it seems none of them are being addressed. Even regarding technology, as the Cathaoirleach just mentioned, people are old school and unwilling to change their ways. I then listened to the witnesses talking about problems in accessing services. I refer to what the situation would be like if these organisations did not exist. It would mean people without cash would have no hope. It is 2023 and we are talking about this issue. It is just driving me bonkers.

I heard Cír speak about job opportunities being extremely limited. I am really worried about this and more so about younger people who have not got an official diagnosis of being autistic but who are going through the court system. These could be cases involving a misdemeanour, something happening in the family, breaking a curfew or something like that. The courts are looking at people just as personal public service numbers, PPSNs, as usual, but not seeing them in the light of whether they have autism. The child then just gets lost in the system. Have the witnesses come across this kind of situation in their experiences? Is there any way in which we can help with the court system? Senator Black mentioned having a pleasant time with the officers in one Garda car but not so with another. It depends on the experience of individuals and this comes down to training.

There is another issue I am very interested in because of my background working in mental health. Nem was right about this point, which is that someone who has any form of disability is out of CAMHS and has no places to go. There is nowhere, zip, nada. This situation must be addressed and we have been talking about it. My main question concerns tomorrow being the commencement date for the Assisted Decision-Making (Capacity) (Amendment) Act 2022. What kind of difference will it make or should it make to people in these services? When it started, I remember working on much of this legislation and researching it. It was predominantly concerned with mental health first. We then started looking into the aspects of disability services, respite services and end-of-life care, and realising this is a huge issue. It is also, however, about giving people rights. What I love about all the witnesses' organisations is that they all are taking a rights-based approach. I know there is a medical section as well and so on. I have referred to this rights-based approach in so many different committee meetings, when it came to issues such as mental health or the Sláintecare report. In the case of every person who needs an assessment, a further diagnosis, or whatever, it should be based on the individual's needs and not his or her means, on the dosh in the pocket.

We are now in the middle of 2023. We have listened to the statements of all of the witnesses and we have listened to others fairly intensively over the last few months and it is clear that we need to get people into the one room to come up with a collaborative plan, to get everybody working together. As the witnesses themselves said, people are working in silos, protecting their patch for fear they will lose their stake in it, instead of sharing the knowledge. Our guests are world leaders. They are proving that this can be done on a not-for-profit basis and yet we are spending billions on our health service while going around in circles. Some are getting thrown out of certain circles.

One of my bugbears is in the area of CAMHS and disabilities where, surprise, surprise, when patients hit 18 years of age they are on their own. I hate using the word "disability" or "disabled" because for me, it is a tag. A tag is applied to a section, the disability section, and it is assumed that people will be grand on their own. They will get nothing in terms of services but the Department will give them a few bob every week. It will give them just enough to keep them happy - not too much but not so little that they will complain. We should be taking these people as stakeholders because this should be about integrating everybody into society and accepting everybody. There is no colour, class, creed or religion when it comes to suicide and it is the same for disabilities.

I am very interested in hearing the witnesses' view of how the Assisted Decision-Making (Capacity) Act affects those in the disability sector.

Ms Tara O'Donnell-Killen

Nem Kearns will have more detail on the policy piece. We would very much align with the submission made by Inclusion Ireland. It is so great to hear the Deputy talk about that and about the human rights aspects of this. That is exactly how we see it. We are not dismissing, in any way, all of the struggles that are faced by autistic or otherwise neurodivergent people or any of these intersectionality issues in our society.

I would like to respond to what the Deputy said about prisons and courts. It is fantastic to see that there are separate teams within our public system who are trying to work out how to help the people who are in the system already. We have been approached by some of the psychological and support teams that look after incarcerated young people because they are recognising that there are huge numbers of undiagnosed neurodivergent people in the system and they want to know how to help them from a human rights perspective. They know that their knowledge is outdated and it is excellent to see that they have sought funding to put training in place. There are silos, as the Deputy said, but there are also great teams of people who want to make a difference but they need help, from the top down, to make that a reality.

Ms Davida Hartman

It often comes down to individual people with a particular interest in those groups contacting us for training and support, rather than an overall strategy.

Deputy Pat Buckley

We have to have a wider conversation about this. People outside of this committee and others - including me before I read the notes this morning - may not be aware that The Adult Autism Practice, Thriving Autistic and Neuro Pride Ireland even exist. These organisations have a wealth of knowledge and expertise and a willingness to share them, which is a vital ingredient.

Ms Davida Hartman

There is massive experience and skill on the teams that are already supporting the Courts Service. There is absolutely no reason, with a bit of training, that they could not support autism diagnosis within those teams. I acknowledge that autism assessment and diagnosis is a very new area worldwide and even people who have a lot of skills and experience lack the confidence to undertake that work but that is very easily addressed with training from us or other autistic-led organisations.

Nem Kearns

I fully agree that we have the expertise and the solutions.

We lack joined-up thinking but I would go further by saying there is inertia in the system. There is lack of ambition to make the wholesale changes that are necessary, which are possible but will be hard. Any systemic change is difficult. We know that funding is being invested in areas that do not pay dividends and do not achieve results but it is too complicated to change. It is not even that the funding is lacking, the funding is not being allocated to where it will do the most good because it would require systemic change. What is needed and what is recognised as needed is, as has been said, a needs-led service across the board. However, that would mean that the State would have to do a lot of hard work to update all of the aspects ranging from provisions in the Disability Act to social welfare criteria, in order that everything was coming from a need-led perspective. We are inheriting a very medicalised view where we use extremely narrow laundry lists and tick boxes to indicate impairments and sometimes they are ridiculously narrow. A number of them have been struck down by the High Court and identified as discriminatory. Unfortunately, the State's response in a number of these cases has been to remove the support entirely rather than remove the very narrow criteria. There is an unwillingness to have a paradigm shift to a needs-led, not-diagnosis based, provision of supports and services. To date, we have not seen an appetite for the necessary paradigm shift.

I very much appreciate the Deputy's question on the Assisted Decision-Making (Capacity) (Amendment) Act 2022. While it is brilliant to see the Act eventually being enacted after a long delay, we are in danger of missing an opportunity. The Act was brought in to bring us into alignment with Article 12 of the CRPD. The legislation that we have enacted falls somewhat short but is a once-in-a-generation opportunity to positively impact the lives and rights of disabled people. One area of particular concern is that the Decision Support Service, DSS, has not been fully resourced and equipped to provide a support service. As the DSS seems to be setting up to provide an information service, there is a risk that there will be a gap.

As members will know, the Assisted Decision-Making (Capacity) (Amendment) Act 2022 replaces the Lunacy Regulation (Ireland) Act 1871 of the Victorian era and the system of wardship, which viewed legal capacity as a very binary matter. It meant that if a person did not pass the functional capacity test, then all of one's rights, for all the decisions of one's life, were removed and handed to a third party. The principle and spirt of the Assisted Decision-Making (Capacity) (Amendment) Act was to undo that system and transition people into being decision-makers in their own lives, and support people who needed support in order that everyone could make the decisions they were able to make, no matter what support they needed to make their decisions. Unfortunately, the DSS does not have the necessary resources to provide decision-making support. That means, by default, a number of these people, if they do not already have a decision-making person of their own, may just be under a rebranded disempowering system. It does not have to be the Decision Support Service if the service is not funded and equipped to provide the necessary support. The State needs to urgently identify a means for people to access independent decision support makers. People need to be able to make a free decision to choose a family member or an independent person. The decision needs to be a free choice or else we are perpetuating the system that we seek to replace.

It is extremely important and urgent that this issue be addressed. As the Deputy said, the decision is coming into effect from tomorrow. It is particularly important that disabled people's organisations and people from the centre for disability law and policy in the University of Galway are brought in, consulted and allowed to help the State to identify the appropriate place for decisions to happen. It cannot be left as a gap. This is a fantastic opportunity for Ireland to step up and provide a means for ensuring the rights of all disabled people, all ageing people, all people who may suffer a mental health crisis or a traumatic brain injury, which could happen to any of us, and, indeed, all people in this State are upheld. If people have the right to make their own decisions, that will have the knock-on effect of improving autistic lives and all our lives. If autistic people can choose the services they need, the supports they want and how they want to communicate, it will have an untold effect, but that will not happen if we miss this opportunity we have been given.

Deputy Pat Buckley

I thank Nem for that response. I was led to believe the Decision Support Service would be fully funded. I contacted it early last year and was really excited about what I heard. I was thinking this would go right. Having listened to Nem, I realise I need to revisit the issue, go back and find out what the bloody hell is happening.

Nem Kearns

I certainly hope what the Deputy described will be the case, but the impression we have is that the service is fully funded to provide information but not to provide decision-making support and that it is unclear whether it will do so.

Deputy Pat Buckley

We were told the service would be making a chocolate cake but we are now finding out that it is making a cake with no chocolate. That is what is happening. I do not mince my words.

An Cathaoirleach

The launch that is taking place should tell us more about the direction in which we are going to in regard to the Decision Support Service.

Deputy Ruairí Ó Murchú

I thank Nem for being so straight-talking in their view that the DSS will not be resourced. That is half the problem. We can have all the good legislation and best practice in the world but if we do not providing proper resourcing, there is an issue. In this instance, unfortunately, it is probably not absolutely shocking that this is the case.

A number of themes come across in the interactions we have had with a huge number of stakeholders. One of these is the idea that people need a structure and route map for life. It is the whole idea of universal design, which is not just about buildings, although it is about that, but also about every other aspect of life. I accept that we cannot offer perfection for every person because everybody is coming with a different set of bespoke needs. We look for reasonable accommodations to be made in respect of all services, including those provided by educational institutes and all the rest. We also want people to have all the necessary interventions to provide them with the skill sets and therapies that will allow them to be the best they can be within their lives. None of that is straightforward and the services are often not available.

We all know the issues in terms of the services that are not there. The witnesses have added weight to the argument in regard to an issue we all understand, which is the silo problem, including, for example, where children fall under primary care or under the children's disability network teams and then cannot access CAMHS. In fairness, the people affected, and their parents, are just looking for strategies to deal with particular sets of circumstances. We really need a system that allows for that and for a greater level of free flow. Whatever systems we have, we hope some of the promises that have been made here will rectify some of the problems as regards workforce planning - I do not think they will rectify all of them - such that we have a greater number of occupational therapists, speech and language therapists and psychologists into the future. As I have said before, if we get that right now, we will have a solution to some degree in four or five years' time.

We still have to get down to the real work as to what the best services that can be operated are. In fairness, many of the witnesses have done the thing that happens when the State does not offer services. People step in and put a service in place. Eventually, in the best-case scenario, the State will give some element of funding that offers a little sustainability. It means we have huge element of ad hoc approaches and best practice is not employed everywhere. On some level, that is a statement. People can comment on it. We know what we need. We need it as soon as possible. We need people to be provided with a route map. We have had previous discussions about working with autistic people on a plan for life, facilitating all the various transitions and basing services on the needs of the person.

Comorbidities are a huge issue people have to deal with. From my limited knowledge, as I stated earlier, ADHD seems to be a significant comorbidity. It severely increases the difficulties people face. We come back to two issues, namely the route map for assessment, no matter what age a person determines to come into the system and that there is not much point having an assessment if no service or necessary therapies are available. That is barely a question but perhaps the witnesses will comment.

Ms Davida Hartman

It is true that there is a huge occurrence with ADHD and other neurodivergencies. The Adult Autism Practice piloted also assessing for ADHD and would have loved to continue to do so but as a small service, it was not possible at the time. We could not recruit enough psychiatrists. There were various issues, but ideally, I absolutely agree as regards State services, people should not be going to one team to assess for autism and another to look at ADHD. All those neurological co-occurrences should be assessed and looked at by one team.

Ms Tara O'Donnell-Killen

I thank the Deputy for everything he said. There is nothing I would disagree with. I agree with everything. I will add to the record a point it might be interesting to know. We need diagnosis in order that people can access support, because society has not be designed with universal access in mind. That is when legally reasonable adjustments, as we call them, can be made to make society a little more accessible. The reason we keep homing in on the point about neuro-affirmative and human rights-based training is that Thriving Autistic commissioned an anonymous online survey of autistic adults who are accessing therapy to find out what barriers and helpers they were finding in getting supports. The absolute number one barrier to accessing therapeutic support was concerns that the therapist did not understand how to support an autistic person. That is the number one barrier. That is why we keep talking about training. A very close second was cost. The third top concern people had was that if the therapist did understand how to support autistic people, the autistic person was not respected. Both of those issues came in strongly. The human rights-based approach and training are important. We need the diagnosis because the system is not universally accessible but we also supports to come from a human rights-based lens. The final point is that our report echoes what Dr. Mary Doherty and Autistic Doctors International found in their barriers to healthcare report with regard to telephone calls. In our survey, more than 66% of people mentioned putting off accessing mental health support because of having to make a telephone call. When we switched the question around and asked what would make it easier, online booking was the number one preference for making appointments.

That could really help to reduce barriers.

We have information here. We have a pathway, as the members are all saying, if we can get people together in a room with the will to make it happen, and follow through. There is something really special that we could do here in Ireland to lead the way for other nations.

Deputy Ruairí Ó Murchú

Some of that is best practice, and even in some cases that is going to be simpler to operate, even from an administrative point of view. One does not need somebody at the end of a phone; they can literally have a system. That is the wider question, when we talk about assessment therapies and whatever. If we could actually get the right people into the room from the point of view of saying, "What can we offer today?", then we can work towards filling all the positions we need filled. Then obviously, as necessary, the management systems can be iteratively changed, because nobody sets a perfect plan in place straight away.

Ms Davida Hartman

We do not even have a dedicated phone line at the Adult Autism Practice.

An Cathaoirleach

I will let Nem and Cír in. They had indicated. We will take Cír first this time, to switch it around.

Cír Doyle

Coexisting conditions are huge within the community. While we brought up ADHD, I have yet to meet an autistic person who is not otherly neurodivergent. I am sure they exist, but I have yet to meet one. We also have a lot of physical health conditions to take into consideration. There is a huge overlap between autistic people and migraine sufferers, for example. While people need to be diagnosed properly, it is also important to think about how people access care. All of our healthcare is very siloed and we come into big problems where I know a lot of our members have expressed fear of disclosing that they are autistic while in an emergency room, because of previous treatment and dismissal of symptoms. There tends to be an opinion that we are exaggerating symptoms, or things like that.

It is a question of balancing what one feels safe to disclose to this healthcare professional with what is going to impact one's healthcare. Those two things should not coexist but they do and, if I say I am autistic, there is a fine line between trying to figure out if it is going to negatively impact my healthcare or if it is going to be the key to unlocking what they need to discover what is going on.

Nem Kearns

I wanted to a highlight a couple of points around two very common, co-occurring conditions. Ehlers-Danlos syndrome, EDS, which I believe has been raised at this committee before, is a connective tissue disorder which has an extremely high crossover with autistic people. As it affects connective issue, it is literally a whole-system disorder, and can affect any system or multiple systems in the body. It is of particular concern, because once again, this is something for which we do not have public pathways to diagnosis in Ireland. It is classed as a rare condition; I think the figure is one in 200 people. Like the term "geriatric pregnancy" refers to someone who is over the age of 35, it is one of those medical terms which is misunderstood in a broader context. It is something we really need to invest in urgently. Other genetic conditions tend to have a higher prevalence in Ireland. We have no oversight of the prevalence of EDS.

I would not be surprised if, similarly to a high number of other genetic conditions, due to our small population size, we have a higher incidence of the syndrome than that. Another condition is fibromyalgia, a pain disorder which is an extremely common crossover. The European Parliament passed a resolution approximately 15 years ago, asking all member states to adopt an official recognition of fibromyalgia. Ireland has yet to do so. Urgent action is needed whereby conditions such as that are classed on the rare diseases list which, I think, has not been updated in more than 45 years. We need to look at them. Those two conditions in particular are highly gendered. Nine out of every ten people with fibromyalgia are women. All of these different intersecting issues further inequalities. If one's condition is not recognised, one cannot get support.

Another issue with recognition is that not all practitioners are equally recognised. We have members whose hearts are absolutely broken after having used all of their savings or borrowed money from family to access a private diagnosis, trying to access services and supports with their diagnosis and being told their diagnostician is not recognised. It is very difficult for people to find the information on who is and who is not recognised by various bodies and agencies of the State. It needs to be worked on, because we have widespread issues of there not being enough people and professionals. We need to invest in growing the expertise coming up, but we also have people who have expertise which is not recognised in transfer. That is very low-hanging fruit to take some pressure off the system and the community.

Deputy Ruairí Ó Murchú

I cannot help but think that has been introduced in latter years and it did not happen by accident.

Nem Kearns

I do not know the ins and outs. I would very much defer to Thriving Autistic and the Adult Autism Practice on that, but it certainly needs to be looked at and, at the very least, the information be made available publicly to people seeking a diagnosis. People are spending their entire life savings and ending up with what is, in effect, a worthless piece of paper. They are completely unable to access support and they are even less likely, without support, to be able to save up the money to go to do the whole process over again with someone who is recognised.

I will also flag something that is not very well recognised or understood outside of the community, that is, the legitimate dangers to receiving a formal diagnosis. There are large areas where it is like playing Russian roulette. One that comes up very frequently when speaking with autistic women and non-binary people is if they are parents, especially in an abusive relationship where custody might be disputed in the future, there is an extreme bias in the system. People, especially women and non-binary people with an autism diagnosis on their file, so to speak, are fighting an uphill battle to prove they are fit parents, based purely on that diagnosis. Many parents will not get a diagnosis for that reason, if they feel there is any chance they will need to access family courts or anything like that. There are also a number of careers where having an official diagnosis is seen as a potential risk to losing one's career entirely, due to stigma.

We need to mention the elephant in the room, in that stigma and prejudice are real. We are making great progress, but it is not equal in all areas of society. Half of employers surveyed said they would not hire a neurodivergent person for any job, whatsoever, no matter their qualifications or experience. Things such as that have real impacts on our lives.

I am aware they are much more difficult to address through policy, but we need to recognise those additional soft barriers, so to speak, that have huge and real impacts on people's day-to-day lives and decisions. Unfortunately, I do not have a magic bullet to offer the committee on how to fix that, but if we do not take a cold, hard look at reality when we are coming up with our policy and account for it, we will ultimately have ineffective policy.

An Cathaoirleach

I thank Nem. I indicated at the beginning that if time was just going on we would take a break, but it is just me left to speak and Senator Black wants to come back in with a question. Would the witnesses prefer we take a break now or will we continue for another ten or 15 minutes? We will continue then. I call Senator Black.

Senator Frances Black

My question will be quick. I have been listening to the witnesses and I ask them to talk me through how somebody with autism can be diagnosed. What is the procedure? I would love to know what it is.

Ms Davida Hartman

Traditionally, there was an issue. Until very recently, even the Wikipedia page for autism was only about children and adults were not mentioned. Adult autism assessment is very new and what was happening was people were taking tests or methods used for children and just extrapolating them and using them on adults. This continues today and is inappropriate. Adults were being asked to literally look at a picture book and being observed, extremely inappropriately. There was also use of deficit-based tests and outdated ways of assessment. At the moment there is no standardised test that is in any way good, whether neuroaffirmative or not neuroaffirmative, for assessing adults.

At the core, we have diagnostic criteria for autism. The criteria have their problems because they are all completely deficit-based, but if one looks at the areas and not the deficit-based aspect the criteria are okay. They recognise areas of autistic experience and they are what we have to go on; we have to use the DSM-5 or ICD-11 criteria. However, the core way to assess is to essentially just listen to the autistic person and to gather their experiences. The people coming to us for assessment are a particular group in that they have been able to find us and think they are autistic already. The vast majority of people coming to us have read a lot of information online and are coming to us saying they really think they are autistic and telling us why. We are getting sent 20, 30 or 40 pages of information about why they think they might be autistic and we support them in talking it through. We have taken away the power imbalance. It is not us telling somebody they are autistic or not. It is not a tick-box exercise. It is us exploring with them why they think they are autistic and suggesting we look at this area or that area. We might ask them to tell us about their family and all those kinds of things. It is a collaborative exploration of what it means to be autistic, essentially. What we ask is does their experience align with autistic experience and it is about supporting them to figure that out. We use many different communication methods. We do not expect people to speak verbally. They can send information in writing and we respect their communication preferences.

That is it in a nutshell and it is not rocket science. It is about respecting people to be the expert in their own experience and possibly, though sometimes not, we might know a little more about the diagnostic criteria so we are supporting them in figuring out whether they meet them or not.

Senator Frances Black

Does the practice get people who may not be autistic?

Ms Davida Hartman

Yes, it happens. Again, the sample of people are coming to us have done their research. If someone just went into public services and did a load of assessments in one service, then of course there would not be such high percentages, but there would be people coming in whose experiences do not necessarily align with autistic experience. Typically though, they are neurodivergent in some other way, ADHD or something like that, or it may be something else.

We generally support them and because the method we use is so respectful and open about the power and balance there is no issue there. We support them in seeing what else might be going on for them.

Chairman

For all of us on the committee a common theme is the word "silo". The silos that exist in the system is a recurring theme. Finding a mechanism to break down those silos and having cohesive action is important. Someone mentioned the idea of society understanding and accepting this condition. It is a huge challenge for us to make broader society aware of the issue. I am the parent of a young autistic boy. I am by no means an expert but I have some knowledge of the condition. Tomorrow we will make sure that the community in the Houses of the Oireachtas has a better understanding. Members of both Houses will have training that will give them a better understanding. It is important for us, as the seat of government, to make those changes in the physical infrastructure and also in our knowledge as public representatives. I hope that would filter down through the various Departments to the local authorities and ultimately into society so that everyone has a better knowledge and understanding of autism.

Training was mentioned and that is part of what we are doing. I firmly believe that teacher training needs to be changed. There needs to be more modules on special education within teacher training. At present there is very little. Representatives from the Middletown Centre for Autism have appeared before the committee. We have travelled to Armagh, funded by the State and the Northern Ireland Executive. We are not utilising and getting the benefit of an organisation that is seen as using best practice. It is well recognised at a European level. As has been mentioned today, there are other professionals as well. We need to roll out training across the teaching profession and to parents as well. We have heard evidence here and I know it from personal experience that some of the training being given to parents is being done professionals within the CDNTs. We have a lack of professional staff in the CDNTs. We are left with a situation where we have professionals giving training to parents while they should be working with the children and adults who are their responsibility.

I fully agree that the training needs to be replicated throughout the country for parents, teacher and professionals to give us a better understanding of the condition across society.

In her report Nem spoke about the AAC and we have had discussions on assistive technology here. A young lad from County Mayo, Fiacre Ryan, is the first non-verbal youngster with autism to do the leaving certificate. He was nominated for an award for his book "Speechless" over the Christmas period. He used assistive technology and the rapid prompting method, RPM. There seems to be a blockage in regard to this being used and rolled out but the technology is there. Deputy O'Murchú suggested we meet a lady whose name escapes me now. She is working at the cutting edge of technology in this area. That is where we need to go. We need to use that technology to help young kids and adults to transition to college and indeed help them to communicate in their daily lives. The world is moving at a very fast pace and we need to move with it. We need to use the technology to help people on the autism spectrum as best we can.

I direct this question to Ms O'Donnell-Killen and Ms Doyle. They stated that they envision a world where society would move away from medical and charity models and embrace the social model. What exactly is meant by moving away from the medical model?

Ms Tara O'Donnell-Killen

It is interesting because I noticed that Inclusion Ireland said the same thing, that they also envision that we move away from the charity model and embrace a human rights-based model.

The neuro-affirmative model is different in that it does not view a neurodivergent person as less than a non-neurodivergent person. Initially, the idea in the medical model is that there is a particular way to be human and a particular type of brain; something happened to that brain which made it or that person, disordered; and now we need to fix the problem inside the person or accommodate them within society a little. The human rights-based model moves away from that entirely and says that, just like biodiversity on the whole planet, we also have neurodiversity and differences in brains and we need that. We need different perspectives and different ways of processing information for us all to succeed as a species. Rather than seeing a minority population as being disordered and needing to be fixed, we actually need to accommodate them. We need to recognise that we are all part of this; we built society for one particular type and the way we do it needs to be changed now. We need to recognise we made a mistake when we did not know any better at the time. However, now we do and we need to move forward and embrace the thoughts, perspectives and ideas of neurodivergent people.

An Cathaoirleach

I have a similar way of thinking. Something I probably said 12 months ago is that I do not like the term "disorder". Someone on the autism spectrum is not someone with a disorder, as Ms O'Donnell-Killen says. Unfortunately, some people seem to think that title is needed to be able to get services. I was attacked on social media for actually putting that view out there. It is not a disorder.

Ms Tara O'Donnell-Killen

The social model of disability says that the challenge is the way in which we have created society. People are in fact disabled but it is not that they are disabled by something inherently inside of them, they are disabled by the barriers which society has constructed for anybody who is not one particular type of person.

Ms Davida Hartman

As was said about the use of the word "disorder", we do not use this word at all in The Adult Autism Practice or in any of our reports or documentation. It is never necessary except for applying for disability services and in this case we write a separate letter. We do this and we talk to the people coming to us to say that we know the letter is awful, that we are so sorry and do not want to use this language but have to in order to access services. That is obviously a huge problem.

Ms Tara O'Donnell-Killen

Can I come in on this? That was one of our three points about changes to the disability benefits system to align with this. It is so dehumanising for people that in order to access supports, we have to write and say how terrible they are and how terrible their lives are. It is all misery and suffering. While there are many difficulties, it is not just down to the person; it is down to the society. That is also somewhere we are advocating for a change. Let us co-create and look together at these disability systems. They are supposed to be there because society is not universally accessible. Let us get the people in the room and figure out how we change those systems in order that disabled people who are disabled by society can access them without being dehumanised or traumatised.

An Cathaoirleach

I have another question. We have discussed the Disability Act 2005. I feel very strongly that we need to review and change it. It contains a provision that gives a right for an assessment but there is no right for a service. As we all know, even when people do get an assessment of needs, the back-up service is not there. What are the witnesses views or thoughts on that?

Ms Tara O'Donnell-Killen

It is just appalling that the service is not there. I have three autistic children with varying support needs and there is no support. We have had no support. Everything has had to come from us as a family. There are many people who are disadvantaged by the way the current system is set up and there are many neurodivergent parents who cannot access the support for their kids because of the barriers that are there and the fight one has to put in to try to access that support. It takes all the energy out of the family when they need to be putting that energy into changing the environment for their family members in order that everybody can thrive inside the family. It is just appalling. We are so heartened that the committee has invited us and all of the other autistic professionals and allies here over the past several months.

We are heartened that something is changing. We see it internationally and see the move professionally, where it is becoming more safe to speak up and represent the community as a professional and not hide who one is. It is becoming more safe in certain areas, but not all, by any means. It is a long way to go but I believe we have a real opportunity here. We are just heartened and hope that this committee can push this through and make these changes happen as we desperately need them.

Ms Jessica Doyle

I believe that there are very few services and even when a person does get in, there is a disconnect. The Chair used the word silos earlier there and that has definitely been an issue. I do not know enough about this to give details but I know that this was something that came through clearly in the autism innovation strategy submissions, with the idea of creating a centre of excellence for all neurodivergents, and the idea also of all things relating to neurodivergence being in the same place. The idea might be like the central hub that feeds out to smaller hubs around the country but that could be something worth looking at in how to deal with the issues of silos.

An Cathaoirleach

I call Nem Kearns to speak first and then Cír Doyle.

Nem Kearns

I thank the Chair. I will share just a few random thoughts covering some of the conversation which has happened so far.

If I can be a little blunt, with respect and in the interests of being constructive, it is also important that we ensure that our work on autism is not a silo. A great amount of work has been done with regard to moving to the social model of disability and needs-led provision by, for example, the Committee on Disability Matters by the disabled persons' organisations, DPOs, nationally and locally. It is very important that while the specific needs and issues facing the autistic community are recognised and given due focus, they are not separated from the disabled community as a whole. It is a common experience and our rights are underpinned and can be upheld in the same ways. The UNCRPD is the best roadmap on that macro level and sets out the ambitions and guiding principles, as well as a unifying way. When we are looking at our strategies, policies, and services for autistic people, we should refer back and ensure that those services are in alignment and compliant with the rights of all disabled people as articulated under the UNCRPD. It is a very useful and human rights-based document. It also acknowledges that autistic people are not just one thing. We have our genders, sexualities, our community and racial backgrounds, but also, very many of us are disabled in other ways, and there is a very significant crossover. We risk creating more gaps and silos if we remove autism strategy and policy from the wider context of disability policy and the UNCRPD.

Another harsh truth regarding training is that it is absolutely essential that the development and delivery of that training is autistic-led. Through my professional career, I have undertaken a range of professional and national level autism training and this has ranged from the very good to the completely factually inaccurate and what was, in fact, more damaging than no information at all. It is important to bear in mind that not all autism training is created equal and that when we are rolling out training on autism and autistic people, we ensure that it is correct on a very fundamental level. Misinformation can be seriously damaging. I have sat through nationally recognised autism training that contained debunked science from decades past, which gave further stigma and created barriers for autistic people and equality.

The Cathaoirleach mentioned RPM, which can be very helpful for some autistic people but the communication differences or barriers for autistic people arise for different reasons. They can range from language processing to apraxia and muscular control issues. When we are talking about assistive technology and augmentative and alternative communication, our goal should be to provide access to a wide range in order that individuals can find what works best for them rather than insisting that a prescriptive single type of AAC is the best and should be given to everybody. Not only are people's communications needs different but the reasons they have alternative communication needs may be based on different physical originators.

There was an example of good practice in Ireland. I am not sure if I will get the details completely correct off the top of my head. I believe it was a service under the remit of Citizens Information, which used to provide information on accessible technology in much the same way as Citizens Information but a specialist centralised State independent information service outlining what was available to people, how to access it, whether any grants were available and how to qualify for them. It was an amazing service. While the funding was not renewed, we have a blueprint there and it would also fit into the idea of a centre of excellence. Let me mention that we have a centre of excellence for universal design here in Ireland, which could be an international leader. It has been underutilised to date but it is doing some good work. We should take advantage of it as a country. We have considerable expertise and assets; it is just about utilising them.

An Cathaoirleach

The training we are launching tomorrow is being led out by AsIAm.

Cír Doyle

I wish to make a few points about augmentative and alternative communication, AAC. As Nem correctly said, we need to be able to provide a range of options for people. Not many people are aware of how hard it is even to get access to any type of support for AAC use for a child or adult who is autistic or has other conditions that may benefit from it. If a child receives assistive technology via a school getting the grant, that technology must stay in the school unless the child gets a special exemption. All of a sudden, this barrier means children only are given access to their voice in school. I am part of a Facebook group where people have posted that this AAC app is on sale this week or this iPod is on sale because people are waiting until April for autism awareness month for the AAC equipment to go on sale so they can actually afford it. That is not acceptable.

Many adults, like me, who use it only have their primary phone, which is not best practice. Best practice would be to have a dedicated AAC device. In situations where people are not supposed to have a phone with them, all of a sudden they are left without a voice. When in hospital, I was in a part of the hospital where phones were not permitted and I could not speak that day. All of a sudden, I was getting wheeled around the hospital to different wards because they could not figure out where I was supposed to be because I could not have a voice, purely because of not being able to have my phone in there.

It is not good enough to say we will train people if we do not give people access to alternative communication. It is our right to be able to express and communicate and we need to provide people with that. There are too many barriers when it comes to this type of stuff. Non-speaking members of our community are among some of the most marginalised members. We need to figure out societally how to ensure people's voices are heard regardless of how those voices are done.

As speakers, we take small things for granted, like having an Irish accent. I have non-speaking friends who think it is hilarious because they only speak in an American accent because the AAC apps do not provide an Irish accent. There is a lovely group of people, I believe in Galway, who are trying to develop an AAC for the Irish language. There are children who are not able to learn Irish because they do not have access to the Irish language as an AAC user. I love the Irish language and it saddens me that even when I am having a non-speaking day, I cannot use my usual "Go raibh maith agat" or whatever. Even my name, Cír, is a terrible thing to try to pronounce on an AAC app. There are all these little barriers that we take for granted as speakers. We cannot keep overlooking them, especially when we are not providing non-speakers with access to communication without it being funded out of their pocket at great expense to them.

An Cathaoirleach

I believe it needs to be provided by the State and any app needs to be passed by the Department as something that is correct. Cír earlier mentioned people looking up websites for information. Unfortunately, 90% of information up there is incorrect. It is my view that the State needs to provide that equipment and the apps.

Cír Doyle

When we are talking about training, parents are not given training on how to model good AAC use for children. It tends to be autistic adults or other parents volunteering their time to try to help other parents learn how to model. AAC users are more likely to be able to use it at a quicker rate when it is modelled correctly. There is often the misconception that it will prevent people from learning to talk. Studies have shown that is incorrect; it can actually help to promote users speaking. Even if somebody never speaks, it does not mean they should not be prevented from communicating.

An Cathaoirleach

I take this opportunity to thank all our witnesses, Davida Hartman, Tara O'Donnell-Killen, Jessica Doyle, Nem Kearns, Cír Doyle and Blessing Dada, who had to go off the call. First, I thank them for the work they do in being advocates and working on behalf of young and adult autistic people. It is important that we have people who are prepared to push against the system and push elected representatives like us to ensure we can propose changes. It is our job to put pressure on Government and senior civil servants in the Departments to make those changes. That is what we hope to do with our report, which will be laid before the Dáil and Seanad on 1 June.

Knowing the members on the committee with me, we will not be found wanting in the proposals we will be putting forward. It is then up to us collectively as an all-party group, with members from both Government and Opposition parties, to make sure we implement those changes.

None of us wants to see this report on a shelf gathering dust and that is something we will make sure will not happen. If there is anything else the witnesses would like to tell us, or any reports or information they feel might benefit the committee in making its report, I ask them to send it to the clerk to the committee. I thank the witnesses once again for what they do and the work they have done. We ask them to support us going forward as a committee in implementing those positive changes for the years ahead. The committee is now adjourned until Thursday, 27 April at 12 noon when it will resume in private session.

The joint committee adjourned at 1.40 p.m. sine die.