I thank the Chairman and Senators for the opportunity to raise the need to include the voice of autistic Travellers. It has been said this is a very historic day for Travellers - it is - but it is more historic for autistic Travellers because this is the first time they have been mentioned. I hope to focus on issues affecting autistic Travellers that have come to my attention as a Traveller mother to an autistic child. The first concern we all should have is that I am not autistic, just a Traveller mother to an autistic Traveller child. This clearly highlights the lack of an autistic Traveller voice representing autistic Travellers at present. This is very concerning to me as a Traveller mother and an activist. To understand the issues, we first need to understand what being autistic means and how it affects one's life. My understanding of autism, from rearing my child so far and speaking to autistic adults, is that it is a neurological difference involving the central, peripheral and autonomic nervous systems and that it results in experiencing, thinking about and responding to the world differently from most people. It is not a disease in need of a cure. Autistic people should not be expected to be non-autistic. They should be loved, accepted and appreciated like everyone else.
Currently in Irish society, there is very little meaningful understanding and acceptance of autistics. It is no different in my community, unfortunately. We, too, have a lack of understanding and awareness of autism. In fact, as a community, we do not talk about being autistic. The autistic Traveller voice has not been heard and is still missing in the development and implementation of national Traveller policy, coupled with general policy, affecting the lives of those affected to date. An alarming example of this is in the current national Traveller and Roma inclusion strategy. Out of 149 actions, there is only one that could be applied to autistic Travellers, that is, the action pertaining to a space for children with disabilities, but only in regard to the promotion of the early childcare and education preschool scheme and facilitated access via the access and inclusion model. Therefore, we have no statistics on autistic Travellers. We have no record of issues they are facing, be they children, teenagers or adults, including elderly adults. This is a major gap for our community.
We do not have useful statistics on the general autistic community that we can rely on and compare with ours. When it comes to a Traveller autistic child's development, we constantly hear early intervention is the key to success and growing up to reach true potential. Services are currently based on waiting lists, with over 100,000 on waiting lists nationwide for services such as speech therapy, occupational therapy, physiotherapy, assessments of need and a diagnosis, according to recently released HSE figures. Once a child is finally assessed, he or she is put on another waiting list to be diagnosed, which can take up to 14 months. Until diagnosis in many cases, the child can avail of no appropriate services and gets no support whatsoever. It is unclear from the statistics how many Traveller autistic children there are and the services they require. It is unclear whether the services are both clinically and culturally appropriate.
We have already heard that over 84% of Travellers are unemployed. With the majority of Travellers well below the poverty line, we cannot afford to avail of private therapy for our children. Therefore, we are highly dependent on a domiciliary grant. This is another battle for parents, who have to wait for a period of six months for a decision, which more often than not is a refusal. Parents then have to go through an appeals process, on which a decision again takes months. This takes from the crucial intervention time for an autistic child.
A recent article in The Irish Times reported that in 2018, 81% of the domiciliary grant applications were won on appeal. Clearly, there are needless refusals that affect children's lives. One example of an autistic Traveller child that should alarm everybody in this room is that of a three and a half year old boy who is not speaking and has been waiting on early intervention and for an assessment of need for two years. In that time, he has had no service, intervention or guidance for his parents on how to support him. He has no preschool place for September, he has no home tutor, and his family cannot afford private therapy. His family was not aware of its rights and entitlements and felt very isolated and helpless, with nowhere to turn for support. This autistic Traveller child is being failed at every level imaginable. This, if not overturned, will lead to a very negative outcome for him at so many levels. The State is failing him and many more autistic Traveller children like him. My question for everybody in this room concerns what we are going to do to help turn his life around so his basic needs, as an autistic Traveller child, will be met and his rights vindicated.
A recent report, Invisible Children, launched by AsIAm in April 2019, is based on a survey of families of autistic children facing barriers in securing school places. It found that of the 54% of respondents who were waiting for a school place, 24% were waiting less than a year, 76% were waiting for six months or up to three years, and 66% had applied to at least four schools.
It is again unclear how many, or if any, Travellers were consulted in that survey, whether they came forward or even if they were aware of that survey. It also found that autistic children who have a school place must travel long distances outside their community to their school.
At present, autistic children, including autistic Traveller children, are being failed by the State. I will give one example of a Traveller autistic child within an autistic spectrum disorder, ASD, unit, which should concern all of us. The parents of a young Traveller girl who is not speaking but who uses her iPad as her preferred means of communication, which is sent with her in her bag to school on a daily basis, requested that the iPad be used but it was not used. She also suffered several kidney infections from being unsupervised while attending toilet breaks, which resulted in her being in great pain and distress and requiring hospital attention, despite her parents requesting on numerous occasions for her to be supervised during her toilet breaks. It is clear that this autistic child's needs are not being met and her rights are being violated.
I believe all children should be taught within the mainstream setting equipped with capacity to teach them alongside their peers within their own community. ASD classes and special schools are segregation, similar to the segregation Travellers face within the education system, and as we heard from Minnie Connors, over the generations it still exists; nothing has changed. I want to quote a disability organisation, Starting with Julius, which sums that up:
When we remove children with a disability from the diversity of our own community - from their rightful place in our regular classrooms - and place them in 'special [needs] classrooms' - no matter how good the intention - we separate them from their peers, stigmatize them in their eyes and weaken the strength of their entitlement in the future to be part of that same community.
Segregation in life leads to greater risk of segregation later in life.
Autistic Traveller children who cannot secure a place in school are entitled to a home tutor. As a Traveller, I can see the extra barriers autistic Traveller children will face in trying to access this right if required in terms of tutors not understanding Traveller culture or wanting to home school a Traveller child in a Traveller-specific setting such as a halting site. I refer also to the lack of trust Traveller parents have in inviting a stranger, who is not a Traveller, into their home alongside their child because of the general oppression they would have faced from the mainstream population.
The July provision system throws up similar issues coupled with Traveller parents not being aware of the system. Respite provision involves another waiting list. That again throws up cultural issues for autistic Travellers and their families, which need to be discussed and designed with them.
Autistic Traveller children and adults are part of the general autistic community yet they are invisible. They have no real voice and are not even being heard. I am hearing the alarm bells to conclude but if I may I will outline my key recommendations.