Mr. Adam Harris:

I thank the committee for its invitation to speak on this critically important topic. AsIAm is Ireland’s national autism charity. As an organisation, we are working to bring about an autism-friendly Ireland, a society in which every autistic person is equal, included and valued as they are. In working to realise this vision, we provide supports to autistic people and our families. This includes the operation of a national autism information line, access to a range of support and advice programmes across the life cycle and the provision of autism ID cards. We equally believe society needs to be educated and adapt to meet the needs of autistic people and so run a range of programmes, across Irish life, aimed at equipping businesses, public services, and communities to become supportive, accessible environments for our community.

Autism is a lifelong, developmental difference that influences how a person communicates and interacts with others and how they experience the world around them. Based on prevalence data within the education system, it is thought that at least 1 in 65 people in Ireland is autistic and no two autistic people have the same needs, abilities or experiences. Many members of our community belong to other minority groups also and can also have co-occurring disability or mental health diagnoses. For many autistic people, structure, routine and a supportive sensory environment are critical for health, well-being and participation in day-to-day life. We saw first-hand the impact a loss of such accommodations can have through the Covid-19 pandemic, with many children struggling to communicate, self-regulate or to manage anxiety. Indeed, it is thought that perhaps 63% of our children saw changes to their support needs owing to the pandemic. For autistic adults, who disproportionately experience loneliness and unemployment, the pandemic too often had a devastating impact on mental health or made challenging home environments all the more difficult.

If this is the impact of the past two years in our country, it is difficult to even begin to imagine the overload, the anxiety and the terror experienced by our fellow autistic people in countries that have been ravaged by war or armed conflict.

As a full member of Autism-Europe, we have sought to collaborate with our colleagues across the EU and the Continent of Europe to support the many thousands of autistic people who are either trapped in Ukraine and unable to flee or who have made their way to our respective countries. I will talk a little bit more about some of this work we are doing in a moment. I must, however, also highlight that while we have been able to contact and support many families who have arrived in Ireland, it would appear that disabled people have been disproportionately affected by the conflict and that of the number of people arriving here, in percentage terms, not a proportional number of disabled people are making their way here. Just over 100 children are currently registered with the HSE to access services.

In regard to armed conflicts more generally, we have had no such contact from people fleeing other combat zones such as Syria, Ethiopia and Afghanistan. Under Article 11 of the UNCRPD, states parties must take all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters. It is, therefore, critical that Ireland ensures that autistic and disabled people in all theatres of war are supported to reach our country, access international protection and have parity of access to supports and information from the State and NGO sector.

AsIAm is pleased to have supported Autism-Europe and EUCAP to develop guidelines on supporting autistic people in crisis situations in response to the war in Ukraine. The differences and accessibility supports required by autistic people are often invisible and can be frequently overlooked or misinterpreted in highly stressful environments with disastrous consequences. It is critically important that all governmental and aid agencies working at border points have appropriate training to identify when someone may be autistic, to effectively communicate with a member of the community and, critically, have the required knowledge to provide any medical treatment which may be required by a community of people who often experience and communicate pain and discomfort differently and who may also frequently have co-occurring medical conditions such as epilepsy.

In that context, it is vital to understand that supporting people fleeing conflict who are autistic or disabled is not an unusual reality. If we take Ukraine as an example, at least 444,000 people in that country will be autistic. This is before we even consider that 15% to 20% of any country's population will have a disability and that this figure, sadly, increases in countries which have prolonged armed conflict. It is vital, therefore, that evacuation efforts are fully accessible and inclusive, as called for in the UN Security Council Resolution 2475 (2019). Too often, this is simply not the case and so abandonment, violence and physical and sexual abuse can too often be the horrific consequences. It is particularly important to understand that autistic people will very often require support from across the family unit in order to flee and this must be respected by all actors, including for fathers of disabled people who are of military service age.

Needless to say, fleeing conflict is just the first step on the journey to safety for autistic people who arrive in Ireland from combat zones. As an organisation, we have been privileged to have the opportunity to get to know and support a number of autistic people and families who have arrived in Ireland from Ukraine. We have sought to meet the needs of these new members of Ireland’s autism community by putting in place translation services so that families can communicate with our community support team to navigate the Irish support systems, working with third-party providers to secure additional supports for families in areas such as housing, access to assessment and therapeutic supports and developing resources in the Ukrainian language to support families and autistic people to adapt to Irish life. As a growing number of people arrive in Ireland, we propose to expand and grow this work further. In doing so, and based on the engagement we have had with families to date, we would make several recommendations to the committee.

First, we need appropriate housing and training for host families. We are concerned that steps are taken to ensure that autistic people are prioritised for suitable accommodation which takes due regard of the support needs of the individual, particularly from a sensory perspective. This would be important for all autistic people but particularly for those who have been exposed to such a terrifying ordeal. Linked to this, we believe it is critical that host families and staff and management in other housing facilities have access to training to help them understand the support needs of autistic people. This training should include general information which may be helpful, but also information from the individual family themselves.

Second, there must be a recognition of diagnoses for the purposes of accessing special classes and schools. We are conscious that for young people who have been assessed in Ireland there can often be challenges in accessing appropriate school places if the diagnosis report does not explicitly recommend this. The Ukrainian education system is very different from ours and so it is important that children have access to an appropriate school place even if reports are worded or formatted differently to our own system.

Third is the development of a buddy system within the disability community. Consideration should be given to establishing a system whereby an autistic adult or family in Ireland can sponsor or buddy with community members arriving here for the first time.

Fourth is ensuring parity of access. We are deeply disturbed by reports of individuals with the highest level of support need being left behind in war zones, often in institutions or sometimes due to insufficient support to make the journey. The State must apply the principle of prioritising support for those with the greatest level of need and should thoroughly investigate all options available to supporting those most at risk to reach safety in our country.

Fifth is a capacity review. We are conscious that there were already significant challenges in terms of access to school places and therapeutic services prior to this crisis. It is vital, therefore, that additional funding be made available to support services and schools to meet the demand for support from the autism community.

The sixth and final need is neuro-affirmative specialist supports. Many people arriving from Ukraine and other conflict zones will require mental health support in order to process their experiences and the trauma they have experienced. This need is likely to be particularly pronounced in our own community and so it is vital that mental health services are adequately trained in neuro-affirmative approaches. Furthermore, we are extremely conscious that attitudes and approaches to autism can vary greatly from country to country and culturally. We are aware that there is not the level of deinstitutionalisation in Ukraine and elsewhere that there has been in Ireland. Autistic adults have only relatively recently begun to access late diagnosis on a private basis here in Ireland. It is highly probable, therefore, that there will be many undiagnosed autistic adults arriving in Ireland, particularly women. It is vital that support services are equipped and resourced to bridge these gaps in support and experience.

I thank the committee for its time.