Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

Today we resume our consideration of autism policy and the services and supports provided by the State for autistic people in particular. At our round-table discussion in the Seanad Chamber last Thursday, we heard directly from autistic people, from the parents of autistic children, and from autism representative groups about the difficulties autistic people are facing in everyday life in fields as diverse as engaging with the justice system, the educational system, the health service, or simply when going to the local shop. We would like to hear more about how we could remove any unnecessary barriers which may be preventing autistic people from accessing these vital services and supports and any changes to policy implementation or practice.

I welcome the witnesses. We are joined by representatives from the National Disability Authority, NDA, Dr. Rosalyn Tamming, head of policy, research and public affairs, and Dharragh Hunt, senior policy and public affairs advisor; and from Autistic Doctors International, Dr. Mary Doherty.

This is our second engagement with the National Disability Authority. We last met at a joint meeting with the Joint Committee on Disability Matters at which we discussed accessibility to the built environment, information and communication. Today, we have a broader remit, namely, autism policy in general.

The role of the NDA is to provide independent and evidence-informed advice to Government on policy and practice relevant to the lives of disabled people. This includes engagement with relevant stakeholders, including disabled persons' organisations, DPOs. The NDA also includes the Centre for Excellence in Universal Design, CEUD, and has published numerous interesting guidance documents on many topics which are of interest to the committee, including guidance for justice professionals and local authority housing officers, employment and models of good practice for effectively supporting adults with autism. We look forward to discussing these matters with the NDA. We also look forward to hearing from Dr. Mary Doherty, who is a founder of Autistic Doctors International, which represents autistic medical doctors. We will discuss a variety of strengths these doctors bring to healthcare, including an array of benefits for autistic patients and their core areas of peer support, advocacy, research and education.

I propose that we publish the witnesses' opening statements on the committee's website. Is that agreed? Agreed.

I now call Dr. Rosalyn Tamming to make her opening statement on behalf of the NDA.

Dr. Rosalyn Tamming:

The National Disability Authority thanks the Cathaoirleach and the members of this committee for the opportunity to present on the topic of services and supports provided by the State for autistic people. I am joined by my colleague, Mr. Dharragh Hunt, senior policy and public affairs adviser.

The NDA provides independent and evidence-informed advice to Government on policy and practice relevant to the lives of disabled people, informed by engagement with relevant stakeholders, including disabled persons organisations. We also incorporate the Centre for Excellence in Universal Design.

The end of 2022 saw the end of the national disability inclusion strategy, which had been in place since 2017. This was Ireland’s mechanism to progressively realise the UN Convention on the Rights of Persons with Disabilities, UNCRPD.

The NDA publishes an independent assessment of the national disability inclusion strategy annually, and with the end of the current strategy, we are also developing an indicators report to try to measure the overall effectiveness of the strategy. Data limitations mean it is difficult to evaluate whether the strategy had a lasting impact on improving the lives of disabled people, including autistic people. Work is under way to develop a new UNCRPD implementation strategy during 2023.

Last year, we made a submission to inform the development of the new autism innovation strategy. We advised that it was important that the strategy be framed within the UNCRPD and that due regard be given to Ireland’s existing Government policy on disability which has been based on mainstreaming.

The NDA acknowledges that there are improvements required across a range of public service areas to ensure that outcomes for autistic people are improved and provided in a person-centred way. We developed a number of guidance documents to support interactions of various professions with autistic people. These were part of our commitments under the autism action plan.

We welcome the transfer of functions last week of specialist disability services from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth. This should provide opportunities to drive strategic policy development and more concerted efforts around implementation of the UNCRPD. However, with mental health and older persons services remaining in the Department of Health, close interdepartmental working will be key so that services are strengthened and a human rights approach maintained. This is particularly relevant because of the high incidence of mental health difficulties among people with autism.

It is clear that challenges related to assessment of need under the Disability Act 2005 have led to many families facing lengthy delays in receiving a diagnosis of autism and accessing therapies. Both the health and education systems have been moving away from the requirement for a diagnosis to receive services. However, a diagnosis is still required to access certain supports such as special schools and special classes.

The NDA is of the view that Part 2 of the Disability Act should be reviewed to ensure that it is contributing to children accessing timely assessment and intervention. Ideally, this would have been done in parallel with the current review of the Education for Persons with Special Educational Needs, EPSEN, Act 2004 but, as this is not the case, the NDA advises that perhaps it could be done in the lifetime of the forthcoming UNCRPD implementation strategy. The lack of a clear, publicly-funded pathway for adult diagnosis also needs to be addressed.

The rapid increase in special class places in the education system has taken place despite the absence of evidence that children with disabilities, including children with autism, have better social and education outcomes. The ratification of the UNCRPD, the forthcoming publication of the National Council for Special Education, NCSE, policy advice on the future role of special schools and special classes and the current review of the Education for Persons with Special Educational Needs Act mean that over the next few years there will be an opportunity to shape the vision of inclusive education policy in Ireland, so that the system will meet the needs of all learners.

We know that barriers exist for autistic people in seeking and retaining work. The Employers for Change service funded by the Department of Children, Equality, Disability, Integration and Youth is working to support employers through peer support and information. However, this service is not embedded into the system, and there needs to be commitment to a more permanent arrangement. We know from our research that where people have more contact with disabled people, such as through the workplace, their attitudes to disabled people improve. We funded a consortium of four disability organisations, including AsIAm, to develop an e-learning module on inclusive recruitment and retention practices, which has been widely accessed by employers.

The NDA includes the Centre for Excellence in Universal Design. Universal design is the design and composition of an environment so that it can be accessed, understood and used to the greatest extent possible by all people, regardless of their age, size, ability or disability. The centre develops guidelines, highlights good practice and promotes the inclusion of universal design in curriculums across the education system and through continuous professional development.

The centre worked with the then Department of Children and Youth Affairs to develop universal design guidelines for early learning and care settings, which included design elements related to the needs of children with autism. The guidelines were published in 2019 and the centre continues to work with the Department of Children, Equality, Disability, Integration and Youth on awareness raising and capacity building around universal design of these settings. The centre has also engaged with the NCSE and the Department of Education around universal design guidance for the design of schools.

The centre is also developing a code of practice on accessible buildings, with extensive consultation currently under way. It has also updated the existing code of practice on accessible public services and information to include considerations that would be relevant to meeting the needs of autistic people when accessing these public services.

We are happy to answer any questions related to any of the issues we have raised. I thank the Cathaoirleach.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

I thank Dr. Tamming and call on Dr. Mary Doherty to make her opening statement.

Dr. Mary Doherty:

I thank the Cathaoirleach and the committee for inviting me to this meeting of the Joint Committee on Autism as a representative of Autistic Doctors International. I founded the organisation in 2019 with seven members. Today we number over 700 autistic doctors worldwide. The three most common specialties are general practice, psychiatry and anaesthesia.

Autistic doctors are a hidden minority in the medical workforce but we provide an autistic voice within healthcare, advocating for both our own members and autistic people more widely. We have worked closely with the royal colleges in the United Kingdom, particularly the Royal College of Psychiatrists, and also the British Medical Association and similar organisations, to improve recognition and acceptance of autism within healthcare settings and society more widely.

We give presentations and training workshops to a variety of medical and non-medical audiences on autism from a neurodiversity-affirmative perspective, and we are increasingly involved in the education and training of medical students, specialty trainees and doctors at all levels. We have delivered workshops at various events, including the International Conference on Physician Health. Later this month, I will deliver training to psychiatrists as part of the Royal College of Psychiatrists' national autism training programme, at both foundation and enhanced levels. Upcoming workshops for Health Education England will address the training needs of educational supervisors and autistic junior doctors.

We undertake research with the aim of improving the lives of autistic people. We have active collaborations with multiple academic institutions, including University College Dublin here in Ireland, as well as several universities in the United Kingdom and the United States. While this often centres around the needs and experiences of autistic doctors and medical students, we are also passionate about the healthcare needs of the wider autistic population. Our current projects include exploring barriers to accessing healthcare for autistic adults, several clinically-based projects and we have just developed a novel framework for meeting the needs of autistic people in healthcare, entitled Autistic SPACE, which is currently in press with the British Journal of Hospital Medicineand will be available shortly.

In the autistic community, autistic space refers to places and events where autistic needs are prioritised. We use the acronym SPACE to represent the shared needs of all autistic people in healthcare settings, although we anticipate this will be applicable more generally. SPACE stands for sensory needs, predictability, acceptance, communication and empathy.

My journey into the world of autism started with my son’s diagnosis, followed soon after by my own in 2013.

My involvement with autism advocacy began with AsIAm and the autism-friendly town project in Clonakilty. Tasked with delivering autism training for local healthcare practitioners, and wanting to base that training on the lived experience of autistic people, I began researching our healthcare experiences and outcomes. I was horrified at what I discovered. There is robust international evidence showing that life expectancy is reduced for autistic people, with a large population-based study from Sweden showing a mortality gap of over 30 years for autistic people with co-occurring intellectual disability and 16 years for those without. Leading causes of death were heart disease, suicide, cancer and epilepsy. Suicide rates overall are seven times the general population rate and up to 13 times for autistic women without intellectual disability. While this is shocking, even more surprising is the fact that mortality from cancer is doubled. For respiratory or endocrine disease, mortality is tripled. Autistic people are three times more likely to use emergency departments, three times more likely to be admitted to hospital and, most worryingly, twice as likely to die as inpatients following an emergency department presentation. We must ask why this is.

Our research on barriers to healthcare for autistic people found that 80% of autistic people reported difficulty visiting a general practitioner. The most frequent barrier was difficulty using the phone to make an appointment. Over half reported avoiding or delaying a needed GP appointment because they did not feel understood by medical practitioners. The research also showed an association between access barriers and self-reported adverse outcomes. Many autistic respondents reported untreated mental and physical health conditions, late presentations, the need for more extensive treatment or surgery and an inability to attend specialist referrals or screening services. Most worryingly, one third reported an inability to access care for potentially serious or life-threatening conditions. In practice, this translates to autistic people presenting to services with, for example, late-stage cancer, rather than at an earlier point when curative treatment might be possible. It is not difficult to see how this might contribute to excess mortality for autistic people. Therefore, it is imperative that we address the healthcare needs of the autistic population.

Outside of disability services, autistic people in Ireland are largely invisible in primary care and secondary care, in services for older people and in mental health services. Research shows that the prevalence of autism is stable across the lifespan, but where are our elderly autistic people? How many are struggling in residential care that is not adapted to their needs? Research shows that up to one in ten inpatients in mental health settings is likely to be autistic, and one in five attending outpatient mental health clinics. Yet, we are only at the stage of piloting an adult autism assessment pathway in our public health system. Education and training is the primary need. Appropriate education on autism must be embedded into the curriculum at undergraduate and postgraduate levels for all medical professionals as well as allied professions. This must take a neurodiversity-affirmative approach as this has the potential to optimise the outcomes for all autistic people.

Having been involved in autism education, training, and the development of services for several years, primarily in the UK and more recently in the United States, I am confident that we have a unique opportunity in Ireland to become a world leader in the provision of services for autistic people. There is a wealth of specialist knowledge in Ireland, including a growing network of neurodiversity-affirmative practitioners across varied fields such as psychiatry, general practice, psychology, occupational therapy and speech and language therapy, among others. However, for many autistic and otherwise neurodivergent practitioners, the ableist culture in medicine precludes disclosure. Changing this culture to be more inclusive and neurodiversity-affirmative will bring enormous benefits for autistic healthcare providers and autistic people alike.

I thank the committee for the opportunity to meet today. I look forward to further discussion on this vitally important aspect of service provision for the Irish autism community.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

I thank Dr. Doherty. We will now take questions from members.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I thank the witnesses for their presentations. I will address the NDA first. The national disability inclusion strategy ended at the end of 2022 and that was after an extension of a year. It is somewhat concerning that there is no strategy in place. Is the NDA in any way concerned about that? Is there any indication of when a strategy will be put in place during this year? I know 2023 has been mentioned. I am just wondering why a gap has been left.

The implementation of the UNCRPD is so important and I do not feel it has been given the significance it needs. Things are improving but moving very slowly. Assessments of need and access to therapies have been raised with us continually by parents who are very concerned about the lack of access to assessments and therapies. Dr. Tamming mentioned that the disability Act should be reviewed. That is something we are hearing more and more about so maybe she could expand on that. We would like it reviewed so people would not just have a statutory right to an assessment of need but also access to interventions and therapies. There is a major shortage of professionals working for the HSE and in the teams. I am concerned about the children who need the assessments and interventions now. We are going to miss a generation of children if something is not done and this is not addressed. The Ombudsman for Children said this morning that he asked the HSE for a plan of action in 2021 on how it was going to address the situation and what improvements it would make year by year and he still has not received that. Do the witnesses have any input on that or a perspective on what could be done to address the needs of those children?

There are also issues around education, if you speak to parents of children with autism or another disability. Some autistic children attend mainstream schools with supports but many parents feel they need a special class or special school and they do not feel they can go into mainstream education. It is because the supports for their child are not provided in mainstream classes. That is the way to go. The UNCRPD says we should be looking towards an inclusive education system but the SNAs, resource teachers and supports are not there in mainstream education to allow that to happen. Are the witnesses hopeful, based on the review of the EPSEN Act, what the NCSE is putting forward and the ratification of the UNCRPD, that we will see a more inclusive education system in the coming years?

I thank Dr. Doherty for her presentation. It is quite alarming and has made me think about things in a different way. We hear all the time that the prevalence of autism has increased in recent years and we associate it with children. People say we did not have autism years ago but that is not true. Dr. Doherty made the point there that there must be lots of elderly people who are autistic and who have suffered for many years. The supports are not there for them. She spoke about life expectancy for autistic people being shorter. I have heard before that the suicide rate is high and that is obviously because of the lack of support for people and the lack of understanding and acceptance within our society. While that is improving, it has a long way to go. I understand now what Dr. Doherty is saying, that is, that autistic people maybe do not go to a doctor soon enough to get help for a serious condition. She says they go to accident and emergency departments but that has to be such a difficult decision as well. I do not even like going to the accident and emergency because it is so crowded at the moment. That has to be so difficult.

We often talk about more training for teachers dealing with autism but what we need is training across the board in all professions in dealing with autistic people. It is not just about awareness. It is about education and a growing acceptance. Does Dr. Doherty see things improving again? What more needs to be done to improve the outlook for autistic people? I recently had a conversation with an autistic woman who told me she was only diagnosed a year ago. She has encountered difficulties even dealing with the local council. The council staff feel she can advocate for herself and do not understand the difficulty she has even talking to them about applying for housing.

Dr. Rosalyn Tamming:

I thank the Deputy for those questions. There is a lot in there. I will start with the UNCRPD strategy. The Deputy is correct.

The national disability inclusion strategy was extended for a year with the intention of developing a new strategy during that time. The Department of Children, Equality, Disability, Integration and Youth is responsible for leading that process but it got a little bit derailed by the Ukraine crisis and a lot of that team was redeployed. It was really only towards the end of the year that attention returned to it. The Department asked us to put together an options paper to share with the national disability implementation group. We presented to that group on some options, looking at other countries and the approaches they had taken, including the length of the strategy, whether there are pillars of certain things and a focus on certain areas, as well as thinking through some of the structures around it and some of the monitoring issues. It was not very in depth but it generated a conversation. Members of that implementation group submitted some written comments and they will all feed into the strategy. The Department plans to do an extensive consultation during the second quarter of this year and the write-up will happen after that. We will support the Department in that role. Part of our role will be helping the Department to develop a monitoring framework for the new strategy but we will support it with consultation or anything else it needs along the way.

I will hand over to my colleague, Mr. Hunt, to respond on the assessment of need.

Mr. Dharragh Hunt:

I thank the Deputy for the question. We reviewed the operation of the assessment of need and published a report in 2011. In that report we pointed out that the core problem was the lack of consensus around what constituted an appropriate assessment under the Act. Obviously work has been done since then and the HSE developed the standard operating procedure, SOP. However, the core problem still remains that there is a lack of consensus around what is actually required under the Act. We have called for the relevant section of the Act to be reviewed because fundamentally the issue is that there is no agreement across and between stakeholders as to what constitutes an appropriate assessment under the Act. The Act was also written before the UN Convention. The convention does not talk about giving people the right to a diagnosis but about giving them the right to early intervention and early access to services and that is where the focus should be.

Since our report in 2011 a lot of time has passed and a lot of children have gone through the system. It seems that what is there is not working for anybody but particularly for children and their families. That is why we called for it to be reviewed. At the time it made sense and we wrote to both Ministers when the review of the Education for Persons with Special Educational Needs Act was announced. These two Acts are intertwined. Clearly there are issues with Part 2 of the Disability Act so it made sense that they be reviewed together. Indeed, it is problematic that they are not being reviewed together and we made that point to both Ministers at the time.

On the question as to whether the assessment of need is impacted by the number of therapists in the system, the answer is "Yes, absolutely". The Deputy asked if there is any quick solution to that on the horizon but I do not see one. I know the relevant Departments are looking at how they can ramp up capacity but that is not going to be turned around in the short term, or at least not that we can see.

Dr. Mary Doherty:

There is also the question on education. Does Mr. Hunt want to take that too?

Mr. Dharragh Hunt:

Yes, I can answer that one too. In relation to special education the Deputy makes the point that many parents are fearful of a move to a new system and that is absolutely true. I should preface my comments on special education by saying that I am a member of the National Council for Special Education, NCSE, but I am not here in that capacity. I am here representing the NDA so I am not speaking from the perspective of the NCSE today.

As the Deputy knows, there has been a massive expansion in capacity since 2011, with a 400% increase in special classes. That represents a significant investment but when looking at that we should also look at the inspectorate report from 2019 which raised questions around whether the ramping up of separate provision is appropriate if the goal is more inclusion. That report raised a number of significant issues around placement, restrictions on and reviews of placements, as well as how much interaction children had outside of special classes in many, though not all, schools. Our position is that as the State has signed and ratified the UN Convention, what it needs to do is a have a vision for inclusive education and a plan for how it is going to make the education system more inclusive.

As Dr. Tamming said, we have a unique opportunity at the moment with the review of the Education for Persons with Special Educational Needs Act and the imminent arrival of the NCSE policy advice. That said, there is a job of work to bring parents along on that journey and to show them that children can be supported in multiple ways. Being in a separate class is one way but the key is having the qualified, experienced professionals in schools who can provide support so that, for example, children can be in mainstream classes and withdrawn for certain educational opportunities. At the moment we have a rigid system whereby children are either in a mainstream class or in a special class with six other pupils. There needs to be much more flexibility and imagination around how children can be included in schools.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I agree with Mr. Hunt. It is a form of segregation really. That is what is happening but the point I am trying to make is that the supports are not there to ensure the system is inclusive. There has to be a change in direction to ensure the system is inclusive. More supports have to be put into mainstream schools so that children can attend their local primary school and get the support and the appropriate education that they need.

Dr. Mary Doherty:

First, by way of providing some hope, while the data on healthcare are absolutely shocking, I have seen massive change in the past couple of years, particularly in the UK. Over the last five years the change has really been phenomenal and we are in a perfect position here in Ireland to replicate that very quickly. It need not take very long at all.

There is a huge need for training among all medical professionals because autism is not on the radar for most people. If it is in the curriculum at all, it is included as part of training in paediatrics and learning disabilities and there is no real recognition of autistic adults.

To answer the question about increasing prevalence, I do not think that is the case. The increasing rates of diagnosis are related to increased recognition. If we think back to when we were children, we can all think of people in school that we would now recognise as autistic. How did I get to this point in my life without it ever being recognised? I do not think there is an increase in incidence at all.

Healthcare is such an enormous issue because so many autistic people are completely excluded from the healthcare system. That is something that we discovered when we piloted our first study. We just assumed, as most healthcare providers do, that people are in the system and will present for care when unwell but we discovered that is not necessarily the case for autistic people. So many people responded by saying that they did not have a doctor, did not go to a doctor or could not access one at all. They are completely excluded from the healthcare system. What is known is that prior negative experiences in healthcare are an independent barrier to future care. So much of that relates to a lack of understanding as well as sensory issues in healthcare environments and predictability issues. There is so much need for training. While so much of the work we do focuses on children, identifying children early and providing supports, we need to think about the adult outcomes for those children. We need to think about mental health in particular because poor mental health, while incredibly common for autistic people, is not inevitable. The way that we identify and support autistic children can have a profound effect on outcome.

Mark Wall (Labour)
Link to this: Individually | In context | Oireachtas source

I welcome all of our guests and thank them for their opening testimonies. I have a number of questions although Deputy Tully has already touched on some of the issues I wish to raise. Adult diagnosis has been mentioned and is an issue that has come up time and time again at this committee. The NDA refers to a lack of a clear publicly funded pathway for adult diagnosis. I ask our guests to expand on that and explain what that means for an adult as he or she goes through life.

There is rightly considerable concentration on children's diagnosis. Dr. Doherty has mentioned late diagnosis, something the committee has heard about frequently. More and more people are coming to my clinics telling me of late diagnosis and adult diagnosis. They are crying out for a pathway as she mentioned. What can we do to support that? What can the committee do in its final report to highlight that issue?

The issue of work for autistic people has repeatedly come up at the committee. Both Dr. Doherty and Dr. Tamming mentioned that in their opening statements. As mentioned in those statements, the more people interact with disabled people, the more attitudes change. I ask for some examples of how that is changing. Some of the statistics we have been given show that up to 80% of autistic people are not working or are working very little. It is very worrying for those adults we have spoken about. Based on the research the NDA has done, with increasing contact leading to changes in attitude, does that indicate that more job opportunities are coming up for those people?

Dr. Tamming touched on universal design and the report was published in 2019. I ask for some examples of where that has worked and made a difference for people and communities. She said the NDA is constantly updating that. Where has that worked? Is it being properly funded?

I thank Dr. Doherty for her testimony. What she had to say was at times worrying. She mentioned that we need to replicate what is happening in the UK. Is there any research in Ireland? I know it comes up repeatedly at committees that I am a member of that we should be replicating what happens in other countries. Have we done any research in Ireland on the issues she mentioned today? Do we need to do more research? Is it just a case of replicating what is happening in the UK? Is that example good enough for what we need to do here?

Dr. Mary Doherty:

I will first address the benefit of an adult diagnosis. It is absolutely life changing. I cannot stress enough how much it can change somebody's life for the better after years or possibly decades of not understanding ourselves to suddenly realise that this is the reason that things are challenging in settings that do not seem to be difficult for other people. A perfect example is that as I speak, I am constantly aware of the noise in the background from what I assume is the air-handling unit. It feels like heavy traffic. I need to try very consciously to filter that out although naturally I cannot. It is there constantly. Understanding that makes such a difference. Understanding how communication happens for autistic people in a very different way from non-autistic people is important. It is equally effective but different. Understanding those differences makes such a difference.

I have lost count of the number of autistic adults who have been recurrent and heavy users of mental health services and then finally get an autism diagnosis or other neuro-diversion diagnosis and for the first time in our lives find good mental health. To realise that we are perfectly good autistic people and not broken neurotypicals is absolutely life changing. It is becoming much more common. Because of the increased visibility, that has snowballed and people recognise themselves. Like me, many people are recognising they are autistic after the diagnosis of a child. Even that has changed so much from ten years ago when my son and I were diagnosed. Back then I realised quite quickly during the assessment process, and when speaking to the professionals we were dealing with at the time, that there was absolutely no talk of autistic parents or autistic adults. It is wonderful to see how that has changed.

Regarding employment, we really need an access-to-work scheme as exists in the UK. That really keeps autistic employees in employment when otherwise they might not. It helps people into employment. Very many autistic adults spend far too much energy masking and camouflaging their autistic traits and trying to pass as non-autistic. It is exhausting to have to do that. There are many autistic employees in all fields. Every sector has autistic people, but most people do not disclose. While we need to support autistic people getting into work, we really need to support those existing autistic people in all sorts of sectors. That will help to bring more autistic people into work. Who is better positioned to mentor an autistic young person entering employment than somebody who is successfully working in that field? We see that in Autistic Doctors International all the time as we support our junior doctors from medical students into foundation year training and through the training schemes.

Regarding how we deal with the demand for adult diagnosis, we definitely need to do more research. Earlier I referred to a study from Sweden which showed that 20% of new patients presenting to mental health clinics when screened may have been autistic. We need to replicate that work here for sure. Similar work has been done on ADHD which has sparked an ADHD programme and we need to do the same here for autism. At the moment I am involved in some work by UCD on the mental health needs of autistic adults.

Regarding replicating what is happening in the UK, we need to address from the start the difficulties and challenges being found in the UK, where most autism diagnosis has been done in specialist services which are absolutely inundated. That may or may not be the appropriate route to take here. We need to take what has happened in the UK and build on that, and we have the opportunity to do that.

Dr. Rosalyn Tamming:

I will build on the bit on autistic adults. We did a study in 2017 looking at the international literature to see where services were being provided well. We restricted it to autistic adults who do not have a concurrent intellectual disability. These are the people who really fall through the gap. People with an intellectual disability are often engaged with mainstream disability services. The study found there was not consensus about a really good model of practice emerging from other countries. People are doing different things in different ways. The main countries with programmes in place were England, Scotland and the US.

Dr. Doherty mentioned specialist disability services and that is not necessarily the way to go. Scotland had a specialist approach which was quite comprehensive. Following a diagnosis there was follow-up care to allow that person to accept and understand their diagnosis with the supports they needed then provided. For instance, someone could be gone for years but could come back if a problem arose, which was a good system. It also had one-stop shops where people could go for information. It is a little bit like our Citizens Information but specifically for autism. While the evaluations of them were quite positive, the ongoing funding did not happen. There was a pilot which was great, but then it did not happen. I am not sure that is necessarily the best approach.

Regarding attitudes towards employment, since 2001 we have done a national survey on public attitudes to disability every five years. The last one was in 2017. It shows that in general attitudes to people with disabilities stays roughly the same across time. It is generally poor for people with mental health difficulties. People with autism or an intellectual disability tend to be on the lower end of the scale compared with people a physical disability. That is borne out by research across the world.

The interesting point here is contact theory. When one looks at people in the survey who have a family member, work colleague or someone close to them with a disability, their attitudes are a lot better. The thing to do, therefore, is make people with disabilities more visible within their communities. That is where inclusive education and employment come in. I do not know if we can say that a workplace will automatically employ more people with a disability, if there are already people with a disability in that workplace. However, it makes sense if that is working out, whether there are more job opportunities or not. From research we have done previously, employers say they do not know enough about disability. They are not disability competent, if we can put it that way. They are afraid of what it might involve, what some of the pitfalls could be, and if it will cost them a lot of money. Once a lot of those myths are dispelled, and supports are in place, employers become a lot more engaged. The Senator's final point was on universal design, and a report. I apologise but I have lost what report that referred to.

Mark Wall (Labour)
Link to this: Individually | In context | Oireachtas source

The doctor's own contribution refers to a report, which I think was done in 2000. It is her own report.

Dr. Rosalyn Tamming:

The Senator is referring to the early learning and care setting guidelines.

Mark Wall (Labour)
Link to this: Individually | In context | Oireachtas source

Yes.

Dr. Rosalyn Tamming:

They were published and are more relevant for new builds, to which they can be applied. A certain amount of retrofitting can be done. However, the stage is now about raising awareness that these guidelines exist and should be used, and they should be rolled out. That is what the Department of Children, Equality, Disability, Integration and Youth is working on with us.

Mark Wall (Labour)
Link to this: Individually | In context | Oireachtas source

Are they being rolled out? Are people using those guidelines? That is the question. What is happening with those guidelines?

Mr. Dharragh Hunt:

At the moment, there is a programme of work around building capacity in with the relevant professionals, such as architects, engineers and managers of early learning settings. The long-term ambition, as the Department has indicated, is that there will be capital funding for early learning settings going forward. They will stitch design guidance into that. In future, if one applies for a grant to build or upgrade an early learning centre, it will be tied in with that and it will have to be a universal design. That is where the work is going.

Catherine Ardagh (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

It is great to see what a huge body of work has been done, which the committee was probably previously unaware of. That is great to see. It is also great to speak with adults with autism to see how they are getting on in workplace environments and clearly thriving with the right supports. I thank all the speakers for taking time out of their day to give their presentations.

Ruairi Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I apologise if I look ignorant for leaving straight after this. I was meant to be somewhere 15 minutes ago but that is the story of my life. It is not shocking, but it is frightening when we talk about access to care and lifelong impact for autistic people. The detrimental impact of waiting to get regular healthcare has been laid out. It almost fits into the idea of universal design, but it is like universal societal design. We have seen improvements from employers and ourselves, that accommodations need to be made so buildings, environments and society are more liveable for autistic people and others. There are huge difficulties in relation to universal design. We have known for years, that it would make a hell of a lot more sense if our buildings were to be designed in a particular way to make access easier for people in wheelchairs or those who need other supports. However, developers will talk about the added cost and about how people will not want to take that on. There is a wider issue in that. The trajectory is fine. For early learning settings through to third level, in particular, where we have no choice, we need to make sure we make it easier and better facilitate people. Otherwise, we are cutting them off from a very early stage.

Everyone seems to be in agreement that legislation needs to be updated. There needs to be that sort of leverage and enforced accountability. However, we need something better than what happens with assessments of need, AONs. None of this will matter if that resourcing is not in place. This is my single transferable speech in relation to services, particularly for children. We had the Association of Occupational Therapists of Ireland, AOTI, the Psychological Society of Ireland, PSI and the Irish Association of Speech and Language Therapists, IASLT, before the committee. I think I got most of those right. They told us there is an acceptance that even if we do everything right from now on, there will not be enough speech and language therapists, SLTs, occupational therapists, OTs, psychologists or whatever other services are needed. They say they would need to be involved in the conversation if we are talking about health. It means involving all the relevant parts of the HSE. If we get the workforce planning piece right, and the recruitment piece as right as it can be, while accepting that it will be imperfect, we can at least put a shape and structure on it. That probably means a review of everything from assessment to interventions. Everybody needs something different for that whole gambit. School is a huge part, and some of it is obvious. Services are brought to where people are. That is before we get into adult services. While we do not have enough special needs assistants, SNAs, or others, we know what we need or at least what we would like.

If we are talking about adults I know there is a specific issue at the moment with personal assistants in further education colleges. This is the case with Drogheda Institute of Further Education, DIFE, and the Ó Fiach Institute of Further Education in Drogheda and Dundalk, respectively. They have contracts, which are not fit for purpose. It is an issue on which I am over and back with the Minister. I hope it is moving in the right direction. To a degree, they provide supports to those who need added supports within third level, specifically in further education. They fell between the cracks. It is not something we addressed. If we were dealing with younger kids, it is something that at least would have been partially addressed. We would know what we want. That shows something, and it is an issue that needs sorting. My next point has already been mentioned with regard to adult employment. We had the Trinity Centre for People with Intellectual Disabilities, and others, before the committee to speak specifically about third-level and so on, as well as about engaging with employers. These employers were probably scared of their lives to take this on through fear of doing harm or not doing the right thing. Once again, engagement is absolutely necessary. It is a win-win for employers that cannot get people. It is win-win for autistic people or whoever else. It is an absolute win for their families. It is facilitating that. However, that means engaging all of the State services. That means talking directly about those involved in similar work in the context of social protection. I will not get into the ins and outs of third party operators. I think that is for another day, whether we are talking about the local enterprise offices and even the education and training boards, ETBs. Often people are in here from the State who say it is very interesting. However, at a macro level, business needs to be done. I think I have covered everything and I did not get into the row with Dr. Mary Doherty. I am aware of autism on the basis of my son. However, even before that I am a lot more aware of people who fall into that bracket than I would previously have been. I know a considerable number of people who consider that numbers have increased. I am, therefore, very interested in what was said earlier and would like her to add to it. However, the main point is that we are dealing with this reality in one way or another. We need to offer the services required and make this society a better place. We talk about early interventions, but we do not introduce early interventions.

That is a gambit going from cradle to grave.

Dr. Rosalyn Tamming:

I thank the Deputy for raising those points. On accessibility, I mentioned the code of practice on accessible public services and information, which is a significant code of practice covering many areas. A revised version is currently with the Minister, Deputy O'Gorman, for sign-off. It has been reconsidered to ensure autism is fully covered therein. We hope it will be signed off soon. We are also in the process of developing a code of practice on accessible buildings. Both those areas fall within Part 3 of the Disability Act but they are quite difficult to monitor. If the codes of practice are in place, the monitoring can begin. We have carried out monitoring on accessible public services and recently wrote to all Departments and agencies regarding the prominence of access officer details on their website. Small things like that will lead to incremental changes and that will build up.

The Deputy referred to therapists having appeared before the committee and saying that it will take a long time to build up enough supply. The thinking of the HSE when it developed the preliminary assessment was probably that it needed to move these children along and get them the therapies as soon as possible, but it has limited resources. That may have sort of backfired on the HSE. The therapists were never in favour of that model but there needs to be a compromise somewhere along the way. That is the only way this will work. The perfect cannot be the enemy of the good because, if that is what happens, it is the children who will suffer.

The Deputy referred to the issue of personal assistants in schools or colleges. It is not just an issue in that sphere; it is across the sector. There is a shortage and there are issues with allocation, hours and all that. The education system is quite good in the provision of personal assistants at third level, however, in terms of making funding available. The Deputy's experience in that regard may be different from mine. It is there to some extent, however. The problem for many of these students is that they graduate and then wish to get a job but there is no clear system for them to get a personal assistant to support them in their employment. That is a big gap in the system.

I will hand over to Mr. Hunt, who may have something to add.

Mr. Dharragh Hunt:

I will pick up on the point relating to universal design, UD, and the lifetime cost of homes. We are doing a piece of work on that. He mentioned that the building industry might have an agenda in terms of universal design of homes. We are doing a piece of work to get the costs of a regular home and a UD home costed by quantity surveyors to try to make the case that most of us will need our homes to be adapted at some point and, a bit like investing in green technologies through their lifetime, if homes can be designed in a UD way from the beginning, the lifetime cost will not be as great. It will be necessary to convince stakeholders and the building industry of that but we are doing-----

Ruairi Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

All present deal with issues encountered by people who get moneys, albeit sometimes insufficient moneys, approved for adaptation grants but the house is not fit to be altered or there are significant logistical difficulties in meeting the criteria. I am telling the witnesses what they already know.

Dr. Mary Doherty:

On the prevalence issue, I do not think it is increasing. There is much debate in that regard but most experts of whom I am aware in the field do not believe there is a genuine increase. It is down to two things. It is down to widening of the diagnostic criteria and increased visibility and diagnosis. Many autistic people, particularly autistic adults, are hiding in plain sight in all sorts of sectors and do not disclose, mostly because of stigma and misconceptions, particularly in respect of empathy, for example. I am undertaking a project with a group of autistic psychiatrists at the moment. Of all our members, they are the most over-represented in our membership but they are the least likely to disclose. That is because they would experience an instant loss of credibility among their peers. However, these are the people who understand, in a way non-autistic people cannot, autistic people using their services. They are inundated with referrals from their services from service users who are autistic. Even though their colleagues do not realise they are autistic, they recognise that somehow, they have a way of engaging with autistic people using services.

I am aware of research carried out in Germany which looked at the employment situation of people attending outpatient autism clinics. They found that more than 60% of this cohort were in employment and the two biggest employment fields were education and health and social care. Approximately 23% of autistic adults attending services were working in health and social care. That is a significant hidden minority within the workforce who have so much knowledge to contribute, yet, as a result of stigma, people are inhibited from disclosing. We are aware of medical students and trainees who lost their place in medical school or postgraduate training after disclosing a diagnosis of autism.

There is so much stigma and discrimination. Much of it comes down to the myth that autistic people do not experience empathy, which is absolutely untrue. There is a significant amount of misunderstanding. We need to change the culture so that it is okay to disclose and people are safe to do so and thereby get the supports they need. Too many autistic people in employment are struggling without necessary reasonable accommodations but feel unable to ask for such accommodations because doing so would involve disclosure. Much of it is down to understanding. The experience of being autistic is very different from the experience of not being autistic, yet we autistic people understand one another and communicate among ourselves just as effectively as non-autistic people do among themselves. When one mixes neurotypes, communication can sometimes be more challenging. It should be recognised that autistic people have much to offer, particularly in healthcare and education. Like in medicine, autistic teachers are a hidden minority who have much to offer.

Ruairi Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

That is a given. When Dr. Doherty outlines the issue relating to credibility, it is very obvious, but one can see why people choose not disclose.

There was reference to mental health services. In the context of interventions, a problem is that even where a person, such as an autistic kid in particular, is able to avail of services, if there is a need for an issue relating to anxiety, for example, to be addressed, there is then a ping-pong match with the child and adolescent mental health services, CAMHS, and whatever else. I get that the services are under-resourced and under pressure, but there needs to be an element of flexibility in whatever approach we take or review is conducted in respect of how we operate into the future. People do not particularly care under which bracket they fall. Families in particular just want a solution and a means of dealing with issues better. They want strategies.

Dr. Mary Doherty:

I totally agree. The current situation whereby autistic people are excluded from mental health services is wrong. There are many families struggling to access care. Although autism is absolutely not a mental illness, autistic people are susceptible to mental illness and have a right to mental health treatment for co-occurring mental health conditions. That is not being well addressed currently.

Ruairi Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

There is also the fact that, in the context of early interventions, a minor intervention could have a significant impact. That contrasts with the usual approach, which is to wait until the situation becomes a disaster and blows up.

Dr. Mary Doherty:

Absolutely. Diagnosis, and misdiagnosis in particular, is a significant issue in the mental health services. Of note in that regard is autistic women being misdiagnosed with borderline personality disorder or emotionally unstable personality disorder. That was not recognised until a few years ago but it is now recognised as being very common and we need to address that urgently.

Ruairi Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I thank the witnesses. I have definitely got my money's worth and am now going to run. I apologise for having to leave.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I had to leave the meeting to attend an event relating to young carers. It is all related to people with disabilities and not getting enough supports, whether that is in the home, school or the workplace.

I missed part of the engagement but when I came in my colleague Deputy Ó Murchú was talking about adapting houses and the cost differential between a house that is universally designed and a house that has to be adapted. I was given a figure some time ago for an average of around €13,000 to €15,000 versus €50,000. If a house was built to a universal design in the first place it would cost, on average, an additional €13,000 or €14,000 but if it has to be adapted it could cost €50,000. It seems to make economic sense for houses, or a certain number of them at least, to be built to UD++ standards. A lot of houses are only wheelchair-visitable and they need to be wheelchair-livable. Autistic people have different needs as well. It is about being more open-minded about the design of houses and ensuring a certain percentage are built to accommodate people who have mobility issues or people who have autism or an intellectual disability. It is something we need to move towards. We could all end up with mobility issues as we age and we do not know when we are going to have an accident or whatever so we should keep that in mind.

Dr. Rosalyn Tamming:

As Mr. Hunt mentioned, we are doing a cost-benefit analysis of universal design in housing. We hope to have that done by the middle of this year. That will be beneficial in helping to make the argument around that. I do not have the exact figures the Deputy was quoting. With construction inflation, they may have changed a lot anyway.

I would just make one other point based on what Deputy Ó Murchú asked about autism prevalence. This came up recently because the CSO was doing a consultation for the next census and what questions should go in. Autism has come up in that regard. A lot of people, different groups and Departments have proposed that there be a question about autism on the next census to get those prevalence data. We looked at that and I am sure the census office will set up a subgroup to discuss it further. There is definitely a gap in data on autism but the census may not be the best way to get that. There are a lot of administrative data sets out there that may be incomplete and which could be linked to census data in the future to get more detail about a person. After the 2006 census, a national disability survey was done using a random selection of people who said they had a disability in the census. A very in-depth follow-up questionnaire was done with them, which was hugely important in providing a lot of information. We still quote information from that survey in our work. We are hoping that after the 2027 census, a similar study could be repeated and would fill a lot of the gaps that currently exist. Collection of data is a huge part of the UNCRPD, as is monitoring of strategies and that sort of thing. We think that would be a very valuable thing to do.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

Dr. Doherty mentioned students losing a place on a course. Is that within the third level system here in Ireland?

Dr. Mary Doherty:

No, that was elsewhere. We have members here in Ireland who are medical students, doctors in training and consultants. While some of our members have been rejected from training or medical schools, it is important to say that the majority of our members are working away fine with no issues. We recently did research, which is currently in review, that showed 82% of our members were working with no issues. Neurodiversity in medicine has become a hot topic in the past couple of years. There is an unfortunate and erroneous association, particularly in the UK, between trainees being in difficulty and trainees being autistic or otherwise neurodivergent. For the majority of members, that is not the case at all. When our members run into difficulties, they tend to be in very predictable ways. It is important that we support our members and provide education for the medical workforce and medical educators, who I must say have been really interested in this in the past couple of years. It is providing a solution to challenges that people are facing on a daily basis without actually understanding what are those challenges. That phenomenon exists right across the board, whether in healthcare or education.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

One thing that is coming to the fore at this committee, and definitely at this meeting, is the need to educate society across the board and across all professions. I see it myself as the father of a young autistic son. There are occasions where somebody might not be invited to a birthday party. A lot of that is because of a lack of knowledge of autism. There needs to be more education throughout society in general. I wrote down the word "alarming" when I was reading Dr. Doherty's report because of the statistics and figures she gave. I knew of a lot of the issues with regard to high levels of suicide but I was not aware of the other points. They are alarming. It just goes to show that if we can get early intervention, not just with young kids but with adults, it would reduce a lot of the issues in our health system. Mental health services in particular have been mentioned and the prevalence of the use and need for mental health services because of a lack of diagnosis of adults. We need to put in place a funding mechanism or programme with regard to that and get intervention for adults. That will ultimately reduce the need for mental health services.

Third level education was mentioned. I do not think there is enough funding in third level. Funding has been put in place for certain programmes and I know from speaking to the universities that there is a need for more funding to give support to students but also to replicate certain models. Trinity College Dublin was mentioned. It has a model of working with companies, giving employment opportunities and supporting students in those employment opportunities. That is important as well. It is not just about getting the job. That support is needed for 12 or 18 months afterwards to make sure students settle into the employment but also to make sure the employer is comfortable and has more knowledge about having a young autistic employee.

On 1 March, disability services moved from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth. I presume the witnesses see that transition as positive.

I fully agree about the review of the disability Act. That is something that has come to the fore at every meeting we have had, from every organisation and group and from advocates. It makes sense that it be done in tandem with a review of the EPSEN Act, which is being reviewed at present.

I have a question for the NDA about special classes and whether we should have special classes in schools. We have special schools. I ask the witnesses to speak a bit more on that. My own personal view is that we need special classes within schools to allow for those educational opportunities. Kids could move into the mainstream classrooms and when they need to go back to their safe setting and safe zone within their own special class that would be in place. Dr. Tamming referred to the expansion in the number of special classes. Is she saying there are too many special classes being opened up? I do not think so. I think there is room for a special class to be associated with every school with a certain number of pupils to allow them to transition in and out of the mainstream setting, where fit, and then step back into the safer confines of the special class. I ask the witnesses to expand a little on that.

With regard to the UK, Dr. Doherty mentioned that we have a unique opportunity now to implement changes here. Maybe the witnesses could also expand a little on that.

Dr. Rosalyn Tamming:

On third level education, I think what the Chair is talking about is the supports for individual students. We are working quite closely with the Department of Further and Higher Education, Research, Innovation and Science and the Higher Education Authority. Under the national access plan they have the programme for access to higher education, PATH 4, a funding stream which is specifically focused on people with intellectual disabilities and autism in trying to make the whole university approach more universally designed, and then on specific supports for those students. There is a lot of work going on in that area. Third level institutions are beginning to come much more up to speed. They are realising it is not just that a sensory room is needed on campus but that a lot more supports are needed. We are supporting them in that.

On the transfer of functions, it is positive because they will now be with the disability policy unit along with all the specialist disability services in terms of health and social care. The danger is that all other Departments could say to themselves that the unit is sorted now, they have loads of money and are looking after everything to do with disability. Every Department across Government has responsibility for disability. We need to keep an eye on whether that cross-governmental work is still ongoing.

I will let Mr. Hunt talk about the special classes.

Mr. Dharragh Hunt:

I would not have meant to convey that there has been too much of an expansion. There has been a very significant expansion. Maybe the point is to move away from seeing them as bricks and mortar, a unit on the site of a school. Often when a special class is opened, schools get whole-school training and the teachers and SNAs who are in the special class develop skills capacity. That expansion can be viewed as a very positive thing. There is now much more capacity in more schools to facilitate students with autism to attend. Looking at some of the negative things that are highlighted in the inspectorate's report and in research by the ESRI, in some schools where the children are in special classes, the level of integration outside that classroom is not what it should be. For children who may be placed in a special class quite young, there is an issue with whether that is reviewed. A child might be placed in a special class in junior infants or senior infants. We do not have a process, after three or four years, for reviewing to determined whether that child has progressed and whether he or she needs to be in a special class. There is not a system whereby that child can be moved out into the mainstream class. It does not always happen. There is an issue around placement and review.

Our view is that we should be moving to a more inclusive education system. We have to figure out what that means in an Irish context. We have a lot of small schools. Some countries that have moved further than us in this area have huge schools so it may be easier. We have to figure out what an inclusive education system means in our context. In any of the systems we are aware of, certain children are going to have to be withdrawn for part of the day for sensory reasons or because they need extra support. The question is how we get the right supports into schools to support children and how support can be given in a flexible way that is not either-or in respect of being in a special or mainstream class. It could be that a child would be in a special class for part of the day, or more in it this year and less next year. It should be less rigid.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

Just to come back, I think we need to take the term "unit" out of the language we use. It is used in the Department and across society. I hate it myself.

Mr. Dharragh Hunt:

Absolutely.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

Whenever it is used making announcements in the media from the Department, I think it is not a unit, it is another classroom. That has to change. It should be looked on as just another classroom within the school. It is important that the Department would change that. I agree we need to set a standard across all schools with special classes. I do not think we have one at the minute. In a lot of cases, to be honest, it depends on how the principal runs the school. We do not have a template across all schools. I am aware it is being looked at but it is something we need to implement. There should be a certain model or template for special classes in a school. I flagged it myself at a meeting here before. We should go that route. We have blue flags, green flags, a lot of flags. We should have an inclusion flag. We should set a standard. Middletown Centre for Autism has a template for programmes in schools. We should challenge our school system to set up a programme and fly that inclusive flag. Unfortunately a lot of it is principal-led. Not all principals think the same way. If we set the template and the criteria, they would have to be implemented.

On third level, a lot of the funding programmes such as PATH 4 are specific for infrastructure changes. We need to give more funding for staff and support. I was in a number of colleges where they put in quiet rooms and sensory rooms throughout the buildings but the funding seems to be specifically for a project like that more so than funding to help the administration of the project and administrative support for the students. That is where I think extra funding needs to be put in place. I am sorry for cutting back in.

Dr. Rosalyn Tamming:

There is actually an inclusion flag. It is broader than just disability, it is around immigrants, Travellers and disability, all types of minorities. I think they have only about 40 schools currently. We talked to them recently with regard to whether we might be able to beef up the disability aspect in that model.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

It has got lost.

Dr. Rosalyn Tamming:

Maybe that is something that could grow. It is a very small team running it.

Dr. Mary Doherty:

First I want to talk about education. I could not agree more about changing how we talk about our autism classes, even the word "unit". The way we talk about autism influences how we think about it and that influences how we set up our services. Language is important. Autistic people are just othered within our society. That feeds into it. When we look back and think about other minoritised communities, and how society has changed, homosexuality was in the Diagnostic and Statistical Manual of Mental Disorders, DSM, only 50 years ago. Look at how our attitudes have changed there. That is a really important point to bear in mind around language.

The special class that my son attends is absolutely wonderful. Only for that he would simply not be able to access education. He is very bright but he cannot manage the sensory environment of a mainstream class. It is incredibly important. We have been really lucky, even in primary school. He was really lucky to attend a wonderfully supportive primary school. Despite being refused access to an SNA on several occasions, his school was able to find ways to support him with access to an SNA. Only for that I am quite sure he would be at home out of school. I see the difference in my family in terms of how we approach autism. My son has grown up in a neurodiversity-affirmative paradigm. He is happy, healthy, content and confidently autistic. My older child grew up in that pathology paradigm years ago when we knew nothing else and has really suffered the mental health consequences of that. This is so important.

To get back to healthcare, health literacy within the autistic community needs to be address. We need to address it early with kids. I agree that it is absolutely shocking when we look at the physical health outcomes. We are used to thinking about mental health in association with autism. Why would cancer mortality be doubled? We looked at the process of accessing healthcare as an autistic person and have published our quantitative paper, the statistics from which are in my statement. We are working on the qualitative paper which is currently in review.

It takes the stories behind the numbers. We have used the data we have gathered to make a model of how access barriers impact on healthcare avoidance and adverse health outcomes. This is everything from difficulty using the phone, using public transport and perhaps not having somebody to bring an autistic person to a GP or hospital or to attend the waiting room environment, for example. The waiting room environment in an average GP surgery or hospital emergency department is very difficult. I am currently unwell and I am dealing with a chronic illness so I am very much experiencing the sharp end of healthcare inaccessibility and it is so difficult.

This comes back to understanding autistic people. If a receptionist, for example, or a triage nurse understands both autism and the difficulty an autistic person might have in a waiting room, and says it is fine for the person to wait outside to be called when it is his or her turn, that can make such a difference to autistic people. Perhaps it is about finding a quiet place for the person to wait. It is so very difficult.

There is difficulty accessing healthcare services but also a difficulty interacting with healthcare providers, whether that is communication difficulties or misunderstandings. Then, as I mentioned, there are prior negative experiences. That all leads into learned helplessness, where people feel it is just too difficult to try to access care and then avoid accessing care when needed. That leads, not surprisingly, to adverse health outcomes. Understanding that process very much gives an opportunity for improving the situation but, again, it all goes back to training and understanding.

On how we should address the need for services, I particularly like the Australian system. In the UK, autism was generally dealt with in specialist services. Currently, even in community mental health services, psychiatrists who might recognise that a patient is autistic are not in a position to make that diagnosis and have to refer the person to a specialist team where there may be a waiting list of three or four years. That is unsustainable. There is a move in the UK to address that and the enormous demand there is for diagnostic services. The Australian system is lovely because it is one where there is a multidisciplinary team. One member of the multidisciplinary team, from whatever professional background, can make a diagnosis in straightforward, standard cases. Only in complex presentations might the case then be referred on to a multidisciplinary team. That is a good model.

Many of my GP colleagues in Autistic Doctors International - GPs account for the biggest chunk of our members - feel that it should be a primary care diagnosis. If somebody has looked after a patient for many years and clearly recognises that he or she is autistic, why should there be a need to refer on to a service which has a four-year or, in certain areas of the UK, ten-year waiting list?

We have evidence in our work that the benefit of a GP recognising that a patient is autistic and making reasonable accommodations for that patient is very valuable, even if the patient does not have a formal diagnosis.

In our work we have split our data according to those who have a formal autism diagnosis, which is three quarters of our respondents, and those who do not. We found no difference between the two groups in respect of difficulty attending a GP, the barriers experience or the adverse outcomes. There is, therefore, a very significant proportion of the Irish autistic community which is just not able to access healthcare and is suffering adverse outcomes.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

Senator Ardagh wished to make a contribution but Deputy Flaherty has just arrived.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I apologise to the witnesses for the delay in getting here but I was listening in from the office. I thank them very much for their contributions. Addressing Dr. Doherty first, I am sorry to hear she is unwell at the moment.

An issue that is often raised with me is that people are becoming more aware of autism and are coming to the realisation that children in their family may have it, much like Dr. Doherty did with her own diagnosis. I have autism and the consequence is that there is no pathway, as Dr. Doherty rightly pointed out. Unless people can afford to get a private assessment - this links in exactly with what Dr. Doherty said - they can experience depression and mental health issues.

One of the biggest issues I am finding is in the early years sector. Is there any movement within GP practice to address this because GPs are dealing with it a lot?

Dr. Mary Doherty:

It is a difficulty because the GPs are completely inundated with so many issues, particularly when there has not been training throughout the practice. We need to set up a training programme in Ireland and it needs to rolled out to all medical professionals. It is the same in secondary care where people are just not trained in any way to recognise autistic patients and do not have the capacity to put in place reasonable adjustments which would make such a significant difference to autistic people attending healthcare services.

Some work is taking place in the UK around the training for GPs. As I mentioned, we have developed this framework, Autistic SPACE, which I very much believe will help. This is a memorable way of keeping in mind the various aspects required for reasonable adjustments in healthcare.

Autism can be a very nebulous concept for many practitioners because of the heterogeneity initially. Autistic people present in so many different ways. Some of us speak, others do not, and some of us have co-occurring intellectual disabilities. There are just so many different ways of presenting, yet the core things we all share are those sensory issues, the need for predictability and communication differences. It is vital that we provide training.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

On the training workshops that ADI is providing, what has been the reaction? Obviously, there are significant demands on GPs and the medical profession generally. Is the profession seeing this as a chore or as a real opportunity to skill up?

Dr. Mary Doherty:

That is the real difficulty. There is a big debate in the UK on whether training should be mandatory. Mandatory training has just been brought in for all health and social care practitioners. It is very difficult for GPs because the demands on their time are such that mandatory training is a box-ticking exercise and a chore. As a healthcare practitioner, if I am honest, I know this is the case. We will get much better buy-in by making it optional and engaging people who have a particular interest. That is my personal view. Let us face it, most of us who have an interest in autism have an interest for a particular personal reason. It is the same in healthcare. So many practitioners involved in autism services are either autistic or have autistic family members. There is research to show that autistic children are up to six times more likely to have parents in medicine. Engaging people who want to engage and having that engagement then snowball would be my personal preference.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

It goes without saying that this is a very important committee. It is great to get the insight of so many people. Heretofore, we have been very much focused on and to some degree preoccupied with the issue of young people. It is good to hear Dr. Doherty refer to the challenges that are there for adults also. The data she presented from Sweden are quite frightening. Politicians get very emotional when it comes to suicide but it is clearly very prevalent among people who have autism, with or without an intellectual disability. Surely that is something we should be pushing with the HSE from purely a humanitarian point of view as it is clearly a problem.

Dr. Mary Doherty:

I completely agree and, in fairness, there was movement on that a couple of years ago, just prior to the Covid-19 pandemic, when some things were happening in that area. We need to pick up on those again.

It is important to be aware that the suicide data account for an awful lot of early autistic deaths. The average figures can sometimes give the impression all autistic people die young, which is not the case at all. Autistic people live long, healthy lives, and we need to think about autistic people entering elderly care and residential care services. An elderly autistic person going into a nursing home that is set up in such a way that it is sensory hell, where people are expected to join in in group activities and where they have no opportunity to engage in special interests, is very difficult. I have heard of elderly people who, for example, might have had a stroke and then had difficulty accessing or engaging with rehabilitation services. I have had psychologists say to me they think someone is autistic and ask what they can do. It makes perfect sense. If you understand autism, you will understand why it is impossible or very difficult for someone to engage with rehabilitation services coming into their home, which is their safe space. Autism-aware practitioners make such a difference across the board.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I thank Dr. Doherty, Mr. Hunt and Dr. Tamming for attending. In respect of the NDA and the fact there was not an opportunity for a review in the EPSEN Act, the authority’s secondary recommendation, given the first would have been to have the review under the EPSEN Act, involves doing it as part of the forthcoming UNCRPD implementation strategy review. Has there been any feedback suggesting it is going to happen as part of that or are the witnesses just hoping it will?

Dr. Rosalyn Tamming:

It is just a hope at this stage but we will certainly make a case for it to the Department. The Department is aware, and I do not think it disagrees, that it needs to be reviewed. It is more of a timing issue, given so many aspects have to be sequenced. The Department is not averse to it. We have not decided the length of the strategy but even it was a five-year strategy, it is probably feasible it could happen within that timeframe.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

The authority has started its engagement with the Department.

Dr. Rosalyn Tamming:

Yes.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

Very good. The authority has had some discussion with the Chair regarding what is euphemistically referred to as special education unit spaces and classes. It has had a big role in respect of universal design, with the creation of guidelines and so on, and much of that work was laudable. Do the witnesses get a sense we have not moved beyond the guidelines and that, as a Government and as State agencies, we have not fully bought into it? In black and white terms, if true universal design existed, we probably would not need special classes and there would be totally inclusive education. Every building would be designed to suit everybody. Do the witnesses have any views on that?

Mr. Dharragh Hunt:

In respect of the education sector specifically, we have made the point in the past that autism classrooms are built to a specific spec for sensory requirements and so on, but often the rest of the school is not. If we are trying to integrate children, therefore, where the aim is to have them in the mainstream for as much of the day as possible, that will involve bringing them into an environment that has not been designed for them. Having the autism class designed to meet their needs is fine, but it is about looking at the rest of the school as well. If the PE hall, for example, is loud, that would need to be considered. There is a more fundamental need to look at our school buildings from a universal design perspective and, in particular, from the perspective of students with autism.

Joe Flaherty (Longford-Westmeath, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I was pleased to hear the witnesses touch on employment and they referred to the Employers for Change service, funded by the Government. I do not like suggesting we should follow a US model but I have spoken to an agency in New York that works with the disability sector there. It has brought in a quota for employers tendering for government contracts whereby 20% of their workforce have to have a disability. Is that something we should consider favourably here?

Dr. Rosalyn Tamming:

As the Deputy will be aware, there are minimum targets within the public sector but not within the private sector. It is something we have looked at, although not in a lot of depth. I think there would be some resistance to it and I think it would be difficult to bring in. The measuring of how many people have a disability in a workplace is always difficult. We experience that within the public sector because people do not always wish to share their personal information. Even though it might be stated only on a confidential form, people might not feel as confident doing that, depending on the workplace. Much of the work we do with Departments and State agencies relates to making the workplace inclusive in order that people will be more willing to share their diagnosis or whether they have a disability so that they can be recorded as having a disability. As the committee will know, the recent passing of the Assisted Decision-Making (Capacity) (Amendment) Act has raised the minimum target to 6% by 2025, which is a good thing. More than 30% of Departments and agencies are already at that level, while some of them are still below or around the 3% mark. For the private sector, it would need to be thought about in more detail, perhaps with engagement with the employer bodies and various people such as that, to get a sense of what it would involve and what the pros and cons would be.

Catherine Ardagh (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

Dr. Doherty spoke about Oliver's law in the UK. Should we bring in similar legislation in Ireland? I have a three-year-old child with severe, level 3 autism, and I avoid taking trips to the doctor's or dentist's with him. If it is possible, I will choose to get him the drugs on the phone or from an online doctor. It becomes very difficult for the children. I have not really interacted with any professional, except perhaps speech and language therapists and the OTs, who understand autism and are able to engage properly with my son, and I presume that is the same for families throughout the country. Something like Oliver's law might be very useful in this country. I acknowledge Dr. Doherty stated she does not want anyone to be forced into undertaking additional training but so few professionals have the training to deal with children who have complex needs and are autistic that it might be necessary to make it mandatory. That is just my view on it.

I agree about the statistics. The lifespan of someone with severe autism is 35 to 40 years. I am glad Dr. Doherty sort of corrected those statistics and put her own slant on it to show we can be more positive. It was good to hear her talk about elderly people accessing care in nursing home settings. We need to talk about that and be a lot more ambitious for people.

I cannot see why GPs who have an interest in autism or who have the training should not be able to diagnose. They have the medical background, and in many cases, it is quite clear-cut. It would take a great deal of pressure off the system. This is not to say the HSE would not have to give services, but a lot of parents are accessing the diagnosis part just to get a place at the school, to get the domiciliary care allowance or the incapacitated child credit or to get the ancillary grants that are badly needed for a family to survive. If the GP were able to help with the administration part, obviously not giving the interventions, that would be helpful.

I thank all the witnesses for attending.

Dr. Mary Doherty:

I fully agree with the Senator regarding diagnosis in primary care where a GP has a special interest.

In the UK, they are at the beginning of setting up a training programme for GPs who have a special interest, and it is a question of whether that will then move towards GP diagnosis. However, I know some GPs who diagnose within wider settings. That is the direction we need to go in. It is not some obscure diagnosis that needs a specialist multidisciplinary team for a lot of people. For some it does, absolutely, but not for everybody. That is the first thing to say.

On making training mandatory, we are a long way from that in this country. We need to start with education within the medical schools. We need to embed training in the medical school curriculum, and into the usual, routine continuing professional development that GPs access. Rather than making it something special, let us just get the training into where they already go to get training about heart disease, cardiovascular issues, respiratory conditions - where people upskill and access continuing professional education. That is the route into education, particularly among the GPs. For the wider health and social care professional setting, perhaps mandatory training might be more appropriate. I do not know. I just know how under pressure GPs are in particular. We need to embed training for the doctors and medical staff in hospitals right throughout the country, and again that can be done as part of the regular training programmes that people attend. It does not need to be a specialist programme.

I have not seen the content for the Oliver McGowan mandatory training, so I can not really comment on that. However, I know there is, unfortunately, a lot of training available which really just perpetuates that negative view of autism, and that deficit disorder-based approach, which is in direct contrast to the neurodiversity-affirmative approach, and has really negative mental health outcomes. We have some data from a study we carried out among our own members, and we have shown that considering autism to be a disorder is associated with prior suicide attempts. That is quite shocking, really. The mental health statistics from our own members are absolutely shocking. Some 75% experience suicidal ideation, and a quarter of our members have had previous suicide attempts. Within the autistic community, we know that a neurodiversity-affirmative approach - and this is not just all positivity, or a rainbows and unicorns approach - recognises the strengths, challenges and needs of autistic people in a way that gives kids a chance to grow up with good mental health and positive self-esteem.

The other thing I have not mentioned that is vital is access to communication, and in particular for kids who do not speak, access to augmentative and alternative communication, AAC devices and training on how to use these so that they have a viable means of communication, is absolutely vital. Our medical professionals have no training in dealing with people who, for example, do not speak, and use AAC devices. That needs to become normalised within healthcare so that people can equitably access the services that other people can.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

I thank Dr. Doherty. On the subject of training, I might make the witnesses aware that as a committee we have been pushing, and the Houses of the Oireachtas have agreed that Leinster House as a complex will be an autism-friendly government complex. As part of that, training is going to be rolled out to all 1,500 political and non-political staff across the campus. It is important that we, as a seat of Government here, lead from the top, and we need to roll it out that accessibility across all public buildings. However, as was mentioned earlier on, the public sector needs to meet the targets set with regard to employing people with various disabilities. How can we expect employers in the private sector to do it if we can not meet our targets in the public sector?

With regard to sensory rooms and schools, one school in my local area set up a class in September 2022 at quite short notice, but did it over the summer holidays, and got it in place. I was there approximately five weeks ago, and they now have a sensory room in the school as well, with a card for other students. It is available so when the student is in a mainstream class, it is beside them in the centre of the school, and for other students who might need that sensory stimulus, it is there as well. That is forward thinking, and the way to go, and it is important to give them a shout out. It is Moyne Community School in Longford, and it is great that they were thinking and had the foresight to go and do it themselves. They did it at their own cost - it was not funded - and they put it in place. That is where we need to change and educate society and everyone to fully accept and embrace, and to make sure we have all of these facilities in place.

I got a lot of media attention at the time, but I think the word "disorder" - and I mentioned the word "unit" already - gives a wrong impression of what autism is, that it is a disorder. I got a lot of social media abuse for making that point at an earlier stage. But it is not. The term gives a wrong perception of what it is. Our language, understanding and knowledge needs to change.

We mentioned adults on the autism spectrum. Last Thursday in the Seanad chamber, we had a number of self-advocates speaking about their experiences. They had a guidance document with regard to the justice system, and this was an issue raised at the committee by a couple of people with regard to how they found it difficult to engage with the justice system. Since the NDA's guidance document was issued, has the justice system made any changes that were put forward? Not by what we heard last week, but I would like to hear Dr. Tamming's view.

Dr. Rosalyn Tamming:

One thing related to that was that we developed an advice paper on intermediaries, who are people who work between someone who has a communication difficulty and the court. As a result of that, there was a pilot scheme set up, and training. The first cohort will be graduating, probably by May or June, down in Limerick. These are people who will be trained to work as intermediaries, and they will be placed in courts to work not just people with autism - and I am sure they will make some of the cohort - but people with communications difficulties who find it difficult to interact with the courts, whether they are witnesses or someone who has been convicted. That is a good development, and it arose from that.

A lot of the document was just advice about simple things, like how you should interact with somebody - that they are in a very unfamiliar environment, and more time should be given, and that there should be an understanding that they might not be taking all the information in. All of those communication things and softer skills take a lot of time to develop and bed in. There is probably a need for training to go along with the guidance. The guidance is one thing; you can read it and say that it makes sense, but to actually apply it in your work is a little bit more difficult. It is not something we have gone back to evaluate, but maybe it is something we should have a look at and see if people found the guidelines helpful, and what we can do to improve them for a version two.

Micheál Carrigy (Fine Gael)
Link to this: Individually | In context | Oireachtas source

It is positive to know that trained professionals will be coming into the system later this year.

That is all of our questions for today.

I thank the guests sincerely for attending the meeting. Their attendance and comments have been extremely beneficial. Any other information or recommendations they feel would be beneficial to us as a committee can be sent to the clerk to the committee and will be circulated to the members. Our aim is to publish our report on 1 June 2023. We are hopeful that the recommendations we make will be implemented over time by Government, and by future Governments. All of the members are committed to making sure the report does not sit on a shelf and that its recommendations are implemented. It is important that it is implemented because it is about making positive changes for both young children and young autistic adults as well.

As there is no other business on our agenda, we will adjourn..