Mr. Adam Harris:

I thank the committee for the invitation to speak to it today on this important subject matter. AsIAm is Ireland’s national autism charity. Our vision is an Ireland where all autistic persons are 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 build the capacity of society to facilitate true inclusion.

As members will be aware, autism is a unique neurotype. Autistic people communicate, interact and experience the environment in different way from those who are not autistic. While Ireland does not have a census question on autism, we know that increased awareness and understanding have led to more people being identified as being autistic in recent years. While 2016 data from the National Council for Special Education, NCSE, indicated that one in 65 students in school in Ireland is autistic, it is notable that the Department of Education has recently indicated that number is likely to be closer to 3.3% of the school-going population. It is reasonable to assume that prevalence is represented across Irish society when adults without a formal diagnosis are also considered.

Autistic people are neurodivergent and therefore share many experiences with people who have other neurotypes and diagnoses, such as attention deficit hyperactivity disorder, ADHD, dyslexia and dyspraxia. In the context of any discussion around accessibility and universal design, this is an important consideration, as many of the adjustments or reasonable accommodations that may support an autistic person will support many others too. For example, visual information improves accessibility for those with dementia, those who may be functionally illiterate or those for whom English is not their first language. Reductions in background noise would improve accessibility for those who use hearing aids or suffer from migraine. This is before we even consider the reality that when an autistic person is excluded by the environment, it often has a much broader implication. As a child, there were many places I found to be overwhelming, from restaurants to busy shopping centres. The reality was that if I could not go somewhere, very often our whole family simple did not go. This leads to many people missing out on important day-to-day activities and represents a lost opportunity for many services and businesses.

I welcome the opportunity to participate in today’s discussion, as too often the invisible accessibility barriers that autistic people encounter are not widely understood or even considered as accessibility requirements, despite being a legal requirement. There can be a tendency to focus on how the person responds to an inaccessible experience instead of asking why that person is feeling overwhelmed in the first place. The UN Convention on the Rights of Persons with Disabilities, CRPD, calls us to recognise that disability is experienced by the interaction between the impairments an individual may have with the attitudinal and environmental barriers within society. Creating universally accessible environments and services is critical to this.

In AsIAm, we address autism primarily as an accessibility issue. Autistic people experience barriers in society that others do not and, as a result, are often deprived of the same chance to access critical public services, engage in leisure activities or even do mundane tasks such as going to the supermarket or visiting a doctor. Small changes can truly make a big difference. In AsIAm, we explore accessibility through four key lenses: communication; predictability and control; sensory processing; and judgment and attitude. How others respond to a person who is experiencing the world in a different way is, as the community consistently tells us, the single biggest barrier autistic people encounter within the community. Public education and engagement must be seen as a critical component of accessibility and, in our experience, the creation of accessibility supports not only improves the experiences members of our community have, but also serves to demystify and destigmatise autistic experiences.

When we talk about accessibility and autism, it is important to recognise that, just like the general population, every autistic person is different and the sorts of accommodations and adjustments a person may need can vary greatly. Indeed, at times they can even conflict. For example, one autistic person may be hypersensitive to the environment, while another may be hyposensitive. As a result, accessibility in autism cannot be codified in the way, for example, some physical accessibility adjustments can be. However, we can create lenses or frameworks in which we can think about autism accessibility. One such example is the ASPECTSS framework developed by the Egyptian architect, Dr. Magda Mostafa. ASPECTSS stands for acoustics, spatial sequencing, escape space, compartmentalisation, transitions, sensory zoning and safety. AsIAm was proud to work with Dr. Mostafa to develop design guidelines for university buildings based on our partnership with Dublin City University, DCU. This framework will now inform all future building projects in DCU and has a much wider applicability also. I will be delighted to share it with members if it is of interest.

In AsIAm, we run a wide range of training and accreditation programmes to support organisations to consider the accessibility requirements that autistic people may have and to put in place the appropriate adjustments. This includes the autism-friendly university award, which I referenced, alongside our autism-friendly towns award, which this year will work with 20 communities across Ireland, and our autism-friendly schools programme, which was recently successfully evaluated by a team of researchers in Mary Immaculate College.

While each accreditation process is different, there are a range of common considerations across all our work in this area, many of which we would like to see adopted more formally by the State as a means of enabling the participation of autistic people in society. Central to the consideration of accessibility must be autistic voices and experience. Autistic people should be involved in the development of guidelines and accommodations and our lived experience should inform every aspect of how accommodations or adjustments are provided and made.

There is a distinct lack of understanding of the sensory differences experienced by autistic people. The rise of multipurpose space and open plan have made many day-to-day environments, including new school buildings, very overwhelming for many members of our community. We believe all buildings should undertake a sensory audit to consider the experiences of autistic people and make adjustments accordingly.

For autistic people going new places or trying new things, especially in stressful situations such as healthcare settings, can be extremely stressful and challenging. We live in an information age and the appropriate use of websites, video and photography can go a long way towards easing this burden. Showing a person what to expect prior to visiting somewhere can empower an individual to make informed decisions.

Autistic people and neurotypical people can encounter a double empathy problem when interacting. Both communities need to learn to respect and understand the differences in communication, from the use of body language to the use of words. There are insufficient means by which a non-speaking autistic person can access public services independently and how communication is provided is too often imprecise and confusing. The most important accessibility change in this area would be universal training on autism for all public services, coupled with improvement in the ranges of modes of communication. For example, many autistic people find the telephone overwhelming, but too often this is the only way to access vital services, such as a GP when people are sick.

When we consider the accessibility requirements from a universal design perspective, there is much to consider. Moving forward, we should be ensuring all services and businesses are fully accessible by design. What about existing infrastructure? What about settings and services, for example, a busy health centre, which by its nature will pose some accessibility barriers for autistic people? We must remember that not every autistic person is diagnosed or aware that they are autistic and many people do not feel comfortable sharing their diagnosis. As a result, it is vital that as many accessibility measures as possible are applied universally and open to all. This not only destigmatises but, in many cases, makes for a better experience for everyone.

There may then be other accommodations that, to protect their integrity, it is important to have as a means of a person identifying why they need this support. An example is priority queueing. AsIAm issues an autism ID card to support this sort of access and we welcome the developments surrounding an EU disability card.

Finally, there may be some accommodations and adjustments that are unique to the individual, for example, avoiding a very particular sensory trigger. Where this is the case, it is vital that organisations provide neuro-affirmative information in advance, which supports and gives confidence to an individual to request these supports.

Autistic people adapt every day to a world that is not built with autistic people in mind. It is essential that society meets us halfway and we create more accessible environments, communication systems and information that empower and support everyone.