I thank the Chairman and committee sincerely for the invitation to speak here today and for the generous engagement that the committee has already had with our organisation in recent weeks. We were especially appreciative of the opportunity to deliver training to the committee members prior to the public hearings. As members are aware, AsIAm is Ireland’s national autism charity. Over the past eight years, we have been working towards our vision of an Ireland where every autistic person is accepted as they are - equal, valued and respected. Our purpose is to advocate for an inclusive society for autistic people that is accessible, accepting and affirming. We work to support the autistic community and our families to fully engage in Irish life and to build the capacity of society to facilitate true inclusion. In everything we do, we are guided by the lived experience of autistic people, with half of our own team being autistic or neurodivergent. We run a broad range of programmes to realise our vision. This includes the recently established autism information line, the AsIAm autism ID card programme, and a range of supports including social and employment programmes for autistic people alongside formal autism-friendly accreditation for businesses and public services.
The establishment of a joint Oireachtas committee on autism and the drafting of a national autism innovation strategy have been long-standing strategic priorities for AsIAm since our foundation in 2014. We consider the committee's work to be a once-in-a-generation opportunity to create a joined-up approach to support autistic people and our families. We believe this committee can create a blueprint for an inclusive and accepting society and help to drastically shift how autism and autistic people are seen, perceived and empowered within Irish society. We welcome the approach taken by the committee so far and we hope that in the nine months ahead, the public hearings will provide an inclusive, rights-based, neuro-affirmative approach for autistic people and our families to have our voices heard.
There has been an increased policy focus on autism in recent weeks and months. Alongside the committee, we are intensely engaged with the Minister of State, Deputy Rabbitte’s autism innovation strategy consultation. We are represented on the advisory group of the Education for Persons with Special Educational Needs, EPSEN, Act review and we have been working closely with the Department of Education on the ongoing barriers which persist for autistic people accessing their constitutional right to an education. These initiatives are long overdue. However, I must stress that the benefits from any of this engagement will ultimately be judged and assessed on whether it delivers much needed change for the community.
In the past two weeks the committee has focused its attention on the barriers autistic people experience in accessing a suitable and appropriate education. In many respects, the issues at play in the area of education, namely, a lack of effective forward planning, a lack of proactive support and guidance for families, under-resourcing and a need for greater training, culture change and accessibility measures are indicative of the barriers which our community faces in every aspect of Irish life. In a recent AsIAm survey, we documented the experiences of some 268 children who did not have an appropriate school place for September. We believe this figure to be just the tip of the iceberg. We welcome the emergency legislation introduced by Government but see it as just the first step.
One cannot create an inclusive education system simply by permitting people to enter a building. Deeper change must follow and meaningful integration for students in special classes is vital and far from a universal reality at present. We need to take a rights-based approach to this area and that is why our organisation is engaging with the EPSEN Act review and continues to oppose any non-rights-compliant measures such as the establishment of special education centres. As we sit here today, there are many children and young people, especially those who attend special schools or who have the highest level of support, who have been unable to access this year’s summer programme and whose family face a summer without structure or support. I hope that the committee will look at the issues autistic people face in education in more detail and would welcome further engagement in this regard.
It is critical, however, that the committee also look at the bigger picture and the barriers which our community faces right across the life cycle. Across Ireland, autistic people are deprived of the same chance – the same chance to go to school, to access healthcare, to get a job, to live a long, healthy, and happy life. In many respects ours is a community in crisis. We need to see policy change but, critically, we also need to see policy resourced and implemented and we need this to happen urgently. In April, AsIAm published the Same Chance Report 2022. This report consisted of an attitudes to autism poll, conducted with a representative sample of 1,000 Irish adults, and our own autism ID cardholder survey results. The findings from our cardholders survey are startling. More than a quarter, 28% of parents did not believe their child had an appropriate school place. More than half of our respondents had experienced discrimination on the grounds of being autistic. Almost two thirds did not believe the healthcare system was accessible for autistic people and 27% of people did not feel safe in their own communities.
These findings align with the trends we see daily through our autism information line and through the growing body of research, statistics and literature. They are set against a backdrop of increased autism awareness. Indeed, in our poll, 80% of the public were aware of autism as a clinical diagnosis, yet just 40% claim to have a good understanding of autism; an important distinction when it is considered that judgment and attitude is the single greatest barrier to inclusion identified by our community.
Our message to the committee is that, as a society, we need to go beyond autism awareness. It is an important starting point but, ultimately, it does not deliver change alone. The work of this committee must seek to identify means of removing the barriers autistic people face from cradle to grave and empower autistic people to be included, not by changing us but by changing attitudes, enhancing accessibility and ending stigma within society. It is clear that the challenges our community face are not confined to one policy, sector or Department. They are systemic and profound.
When a child is born in the State, most parents can assume they will have their choice of school places and can expect their child to learn, make friends and thrive there. For our community, to even find a suitable place might mean applying to 20-plus schools or settling for home tuition, which is never a substitute for full educational provision. If you are lucky enough to have a place, you will be faced with a series of relentless battles to get the support you need to learn and will often be at risk of a reduced timetable, suspension or even expulsion, just for being you. Making friends may be a whole lot harder. Statistically, it is likely that you will be bullied at some point along the way. Most parents can take for granted that their children will be able to engage in day-to-day activities without supports. The benefits and acceptance that comes from this participation helps to promote self-esteem and positive mental health.
For our community, differences in communication, self-regulation and sensory processing, to name just a few areas, often require access to support in order to be able to engage in education, community or adult life. However, a family may wait many years to get a diagnosis or even to see a therapist. Eight in ten people in our community will experience a mental health condition over the course of their lives and yet we are shut out of mainstream mental health services. “No”, “I am not the right person to talk to” and “We don’t see autistic people here” are perhaps the most common terms our community hears when interacting with disability and health services.
As people grow up, they expect to find work, live independently and feel a part of their communities. For our community, unemployment is a norm, with more than 80% of autistic people unemployed or underemployed. This is unacceptable. Too many adults continue to be deprived the opportunity to work and participate in the community in a manner that meets their needs; pushed instead towards services that are not always focused on the needs and preferences of the individual concerned. For those who secure work, it often means masking who they are, which means having to hide parts of being autistic that others may find uncomfortable or not getting the support they need for fear of being discriminated against, underestimated or treated differently.
Accessing appropriate accommodation and adult day and residential services is a major challenge, with access to any support often only available after a crisis and with few to no pathways for autistic people who wish to live independently or find housing that is suitable to their needs. Going to the shop, using public transport or accessing public services are all mundane tasks for most. For an autistic person, these things often involve sensory overload - sense of being overwhelmed and of inaccessibility. This arises from a lack of suitable training for public servants and businesses, even for those who regularly encounter autistic people.
A long, healthy life is something to which most can reasonably aspire. For our community, low self-esteem, poverty, negative perceptions and attitudes within society and inaccessible healthcare means dying on average younger than most. I know these statistics all paint an incredibly bleak picture of being autistic. Sadly, however, that is the reality for many autistic people in Ireland in 2022. It gives me no pleasure to say this, and I do not want to undermine the very good work and progress that has been made in some areas. Rather, I highlight this because loneliness, isolation, poverty or social exclusion should not be an inevitable part of being autistic or raising autistic people. None of the experiences or outcomes I have described are a prerequisite for an autism diagnosis. A happy, healthy life should not be an exception for an autistic person - it must become the norm. Our community deserves the same chance to be part of the rich fabric of Irish society.
We have already provided a detailed submission to the committee based on our autism innovation strategy submission. This includes 56 specific actions for consideration. While a broad range of actions are required to bring about the necessary change, at this initial hearing, I wish to highlight some key strands the committee should consider and explore in drafting its report.
Autistic people wait too long to receive timely access to supports such as assessment, speech and language therapy, occupational therapy and psychological supports. Too many people are forced to access private services at an enormous personal and family cost, which pushes many people towards poverty. When services are available, they are too often aligned with a medical and behaviourist approach that focuses on compliance or implies the challenge is with the individual as opposed to validating different ways of communicating, thinking and experiencing the world, and supporting a person to participate and develop in life as their autistic selves. Services must not be restricted to children. A public pathway of support for autism assessment and services for adults must be urgently put in place. Supports should also be inclusive of the full diversity of autistic person’s experiences, and instead of taking a functional or medicalised approach, should facilitate people to get supports they need. Supports must also be designed with the needs of women and intersectional minorities in mind. Not providing timely services simply defers and increases the cost of support later at an enormous loss to the individual and society. The State should act as a facilitator, not a gatekeeper. A radical plan is needed and excessive waiting lists must end to ensure appropriate, regulated supports are in place.
As the committee has already identified, much more must be done to support autistic people in our education system. While most young people now attend mainstream schools, this does not necessarily mean they are included. If we truly want to see an education system where every student has the opportunity to attend a school that meets his or her needs in his or her locality, major change is required. This includes addressing the pupil-teacher ratio, implementing mandatory training, ensuring boards of management have the expertise they need, addressing the sensory environment of schools and radically overhauling school discipline policies and the method of educational assessment. Many students suffer greatly in an education system that was not designed with our community in mind and which does not always allow our students' strengths and identities to be recognised and affirmed. Too often, a person or family is provided with a diagnosis with no further context or follow-on support. We must ensure every autistic person and their family has access to supports that empower the person to participate in the community and build the capacity of the individual and family to understand their diagnosis, advocate for their needs and educate those who support them. This included the roll-out of a national post-diagnosis support programme, the provision of key workers and personal assistants and meaningful support for autistic adults to engage in self-advocacy.
Despite the challenges that exist, there is evidence that the public is far ahead of the State in recognising the scale of the challenge and desiring to effect change. All of us are very proud of the strong communities that exist throughout Ireland and this must be better utilised. A programme of supports should be put in place to educate the public to understand autism, run local initiatives and programmes to enable inclusion and ensure every autistic person grows up in a community that is accessible and accepting of who they are. This should take place alongside mandatory training and accessibility measures for public services to ensure they are inclusive of autistic people.
I ask the committee to think radically. The time for local solutions and sticking plasters must pass. We cannot continue to stumble from one crisis to another while our community suffers. We ask members to look to our European peers to benchmark other ambitious national autism strategies and recommend that Ireland not only creates such a strategy but, critically, legislates for it and furthermore, aligns it to the UN Convention on the Rights of Persons with Disabilities, UNCRPD. This strategy would be complementary to existing disability legislation and must have time-bound, measurable goals and corresponding resources.
Covid-19 and the war in Ukraine have highlighted the ability of the State to mobilise and deliver responses. If we put our minds to it, we firmly believe we can create a society in which every autistic person not only receives the supports he or she needs but is empowered to participate and contribute his or her unique skills, abilities and insights.
In 2025, AsIAm will host the Autism Europe Congress in Dublin. We will welcome 2,500 advocates, researchers, practitioners and policymakers from across Europe. What will the Ireland of 2025 look like for autistic people? I hope, through the work of this committee, we will be able to describe a significant shift in how our society perceives and includes autistic people. I hope we can report major improvements in how the State supports and engages with autistic people and family members. I believe that our country, if it wants to, can become an example for others to learn from and follow.
I look forward to further engagement on specific themes with the committee. I will be delighted to take members' questions.