Dr. ?ine Roddy:

I am a lecturer in Atlantic Technological University, Sligo, which is the first technological university in Ireland to be declared autism-friendly. I thank the Chairperson and committee members for inviting me to speak today and the opportunity to make this submission under the remit of autism policy, which I will address from an autism dividend perspective of reaping the rewards of better investment.

Today’s presentation focuses on how autism policies can embrace an autistic person’s identity and their lived experiences to foster greater independence and daily living skills. It is not my intent to describe autism as a tragic narrative but rather highlight the urgent need for considerable investment in appropriate services, supports, awareness and research to empower autistic people to live dignified lives and reach their true potential. One in 65 autistic people in Ireland and their 234,000 immediate family members face significant daily challenges across the life span due to varying and complex needs, and social and financial isolation.

I will now focus on the theme of spend in order to save. The cost of exclusion and lost potential for autistic people and society is enormous.

Autism is recognised as the most expensive condition internationally due to the substantial economic impact on state expenditure for adult assisted care provisions, institutional care costs and high unemployment rates of 80% among autistic adults. Research conducted by the London School of Economics and Political Science, LSE, shows the economic impact of autism on the UK economy is £32 billion per year which is more than the combined cost of cancer, heart disease and strokes.

This raises many questions about the optimal timing of allocating scarce resources and the long-term economic consequences for autistic people, their families and society of not investing in early interventions to improve long-term outcomes, unmet needs across the lifespan and employment support programmes. There is limited published evidence on the cost effectiveness of different interventions and supports for autistic children and adolescents. However, I am involved in publications that are in progress on this.

The next aspect I will focus on are the findings from a national Irish study on the economic costs and unmet needs of autistic children which I conducted as part of my PhD research. I will first read out a quote from a parent and then give different findings and statistics from it:

I constantly worry about what will happen to him when I die. Who on this planet loves him enough to keep being his champion, to fight for all his needs and to dig deeper every day for energy? This is our lives, our journey - hard for sure but deeply human. I love him. I love our life. It's corny but true. Every day there is something wonderful to see in him. I wish services were better so I could keep my energy for being the best mother I can. I sometimes choose not to push for a service because I know how much energy it takes and I'd rather choose to give energy to my family.

Those sentiments reflect many accounts and stories from families really struggling with the lack of support and services in their lives.

I will now outline some of the different figures from the study. The annual cost per child for families amounts over €28,000 as a result of paying for private autism services, lost income and informal care. While over €14,000 of State-funded services were consumed, it is important to note in the papers I supplied that most of that expenditure related to education and special needs assistants. It was not exceptional services by any means. They were very basic State services.

Families whose children are severely affected and those with more than one child affected face significantly higher costs. Some 15% of autistic children in the survey were from one-parent families who face particular challenges in meeting needs. The findings from parental report responses show that over 74% of children and adolescents did not receive one or more service in the previous 12 months.

Some 33% of families incurred debt in the previous 12 months, specifically due to their child's condition, resulting in an average autism-related family debt of over €3,260. Families with two or more autistic children were significantly more likely to experience unmet service needs while families with two or more autistic children were also significantly more likely to incur debt in the previous 12 months, specifically due to their children's condition. The papers I have circulated contain many more figures on the unmet needs and the lack of service provision. There are major difficulties in trying to access services. Even if they had the money for them, the services were not available for them.

On autism policy recommendations, I have three key approaches. There is much more I could write, but I have condensed it down for today's speech. The first one is about implementing a person-centred approach. To respect the diversity of needs and preferences that exist among autistic people, including their preferred language, autism policies and practices need to embrace and respect the identity of autistic people and their experiences, and foster greater independence and daily living skills. We should not use the deficit-based medical model approach to autism which overlooks the strengths and uniqueness autistic people have to offer, including being noted for their sincerity, reliability, creativity, attention to detail and passions.

We need to reduce traumatic experiences through social prescribing programmes for self-advocacy and safety, and implement mandatory training for all health, education and emergency staff. We need a co-ordinated plan to address the needs of autistic people across all sectors of society, health, social care, education, employment, criminal justice system, housing and social welfare.

We need personalised care pathways to address co-occurring conditions such as epilepsy, intellectual disabilities, mental health conditions, anxiety, gastrointestinal issues and sleep problems. We need to address mental health priorities and suicidal ideation from multiple perspectives. Autistic-friendly, accessible mental health services and supports and advocacy campaigns are needed to reduce stigma, mistreatment and discrimination against autistic people. Autism acceptance campaigns are needed to reduce the pressure to camouflage autistic traits and conform to neurotypical norms and environments that may not be autism-friendly and may pose considerable threats to mental health and lead to susceptibility to burnout.

Our second autism policy suggestion relates to the need for strategic investment in autism services and supports. Sufficient funding must be allocated to implement and appropriately resource the national autism innovation strategy. This is needed if we are to address the needs of autistic people across their lifespan. The UK invested almost £75 million in 2021, which was the first year of its new strategy. Timely access to diagnosis must be followed up by making concise evidence-based information and resources available. Innovative pilot programmes must be developed, based on the priorities of autistic people and their families. Those priorities should be evaluated, in terms of effectiveness and value for money, to identify the best delivery approach in school, clinical and employment settings, digitally or in home-based settings. We must explore the enablers and barriers in an Irish context to implement the parent-mediated social communication programmes that are becoming more popular in other countries. Such programmes offer more affordable low-intensity resource use interventions and show long-term improvements. Two programmes that are supported by autistic adults are the pre-school autism communication therapy, PACT, study and the JASPER study. Significant investment in autism research is needed to address the lack of evidence on what are effective services and supports which provide value for money for State expenditure. If autistic people and their families express a preference to be assigned a key worker, we need to know what the most effective and efficient way to deliver this service is. What resources and structures would the key workers need? How much would it cost? What are the potential benefits and savings associated with investing in such support? We must recognise the invaluable role of informal carers and provide various State supports to reduce burnout and financial difficulty.

The third recommendation is around accountability and transparency. The national autism innovation strategy must be underpinned by accountability, transparency and a commitment by all Departments and stakeholders to work together, rather than in silos. Regular progress updates are needed on indicators of well-being and inclusion, waiting times, needs assessments, quality of services and supports, and financial difficulties experienced by autistic people and their families. Public attitudes must be monitored. Appropriate authority must be assigned to deal with any bureaucratic and lack of compliance issues. In conclusion, society can only benefit socially and economically by valuing autistic individuals and their families and allowing them the opportunity to reach their true potential and participate in society.