By Rose Marie Maughan
I am a Traveller woman from Ballinrobe, County Mayo. Like many Traveller women, I became a human rights activist in 2004 after having enough of both external and internal oppression as a Traveller woman. I have been blessed to work within the Irish Traveller Movement ever since in various different positions.
Like any woman, becoming a mother changed my life and my priorities; but little did I know how much it would change, and for the better. I have two beautiful children God bless them. We discovered two years ago my son is autistic. Before realising my son is autistic, I thought I knew what being autistic was, how it impacts on one’s life; it turned out I knew very little. Watching my little boy grow has taught me so much and made me a much better person. I will always be so thankful to him for educating me, his mother, and for opening my eyes to the autistic struggle.
Very few people know what being autistic is.
While autism has become a term most people have some understanding of, albeit usually a poor understanding, very few know what being autistic actually is. Many people are unaware that many autistic people do not consider themselves to ‘have autism,’ but prefer instead to be referred to as ‘autistic.’ There are many reasons for this, mainly because they are part of The Neurodiversity Movement. This movement explains how, just like other human variations, they also have a variety of neurotypes, or brain types.
Being autistic is much more than something which can be captured by a narrow medical model.
Being autistic is much more than something which can be captured by a narrow medical model. It is a specific way of being. Autistics have a different sensory experience of the world, and so are connected to the world and others in a different way to those who are not as sensitive to the world around them. Their experiences are often labelled as ‘disordered’ but that is because the medical model fails to explore and understand their full experiences. Autistics have huge empathy, and busy minds which are creative and logical. Autistics are human beings who have a different sensory experience to non-autistic human beings; they interact with their environment differently to non-autistic people. They have a language and culture which they are just beginning to explore as a community, and stimming is an important part of that. Their way of communicating is very often misinterpreted by non-autistics. Autistics have an ability to hyper focus and to become experts on a subject because learning for them is an emotional experience. The most important part of their struggle is to be seen as whole, full and equal humans whom, as children, have different developmental milestones than their non-autistic peers. Autistics are oppressed by the medical model which is incorrect even in its diagnostics. Part of being diagnosed with autism is that you have ‘difficulties’ with communicating.
Being a human rights activist learning all of this, and noticing many Traveller children being diagnosed as autistic across the country, yet having no voice within the Traveller movement or the wider autistic movement, I wondered where were all the Traveller autistic adults. How come they are not speaking up? I felt obligated to try building awareness and acceptance within our community and try building solidarity between both of our communities.
I could not help notice the missing voice within the training…the actual autistic voice.
Before doing this I had to educate myself as best I could on the subject. It took me about a year to finally get connected with autistic adults and activists. Initially I was met by service providers offering me training to help me understand being autistic and how I could support my son. I could not help notice the missing voice within the training, the actual autistic voice. The next line of support I encountered were other mothers of autistic children. Many of whom have been a great source of support and friendship to me. I joined various support groups, pages on Facebook for parents, but again I longed to reach autistic adults so I could learn from them and work together to bring both of our communities together. Whatever I learned I tried to view it from a human rights perspective and pass my learning on to others. Thankfully I stumbled onto autistic led Facebook groups and pages which opened the door between both of our communities. Around the same time I posted a post regarding supporting the rise of autistic voices which resulted in a flood of support from the autistic community itself online internationally. I honestly never felt so much love and acceptance from any other community in my life. I really was overwhelmed as a Traveller mother to an autistic child. From this contact, I have made many friends and allies and obtained an education of a lifetime. Although I have met and befriended most of my autistic friends online, it is a real friendship, real solidarity between us all. The thing about social media, if used the right way, can change the world for the better, bringing us all together in solidarity.
Reach out and listen to the autistic community as they are the experts here, not us.
From my experience as a Traveller mother who recently learned her son is autistic, what I would say to other Travellers who have autistic children is don’t be ashamed, there is nothing to be ashamed of; talk about it with other Travellers because if we don’t, how will they ever learn? Reach out to, and listen to, the autistic community as they are the experts here, not us. Educate yourself based on your child’s needs and change your environment to meet them. Explain to your family your autistic friendly environment, and support them to play a role within it. Educate yourself on your child’s entitlements and fight for them until they can do so themselves. Surround yourself with supportive Traveller families who have autistic children; because your children need to know they are not alone and they are loved.
The hardest part of our journey together is the fight for services, the lack of understanding and acceptance within my community and society in general. The stares when my baby is stemming in public, which I have learned is self-regulation when an autistic person is sensory overloaded or overwhelmed, and is like breathing to us non-autistics, and is necessary to survive. The lack of suitable play areas and events to take your child as you would any other child. What I really found difficult was the lack of Traveller parents I could talk to for support as a Traveller mother to an autistic child.
Thankfully from raising awareness online, other Traveller parents and family members, and autistic Traveller adults who are not ready to identify, came to me offering support and informing me about their issues which made it possible to deliver a collective presentation to the Seanad on 9th July around hearing the voice of autistic Travellers. This was a historical day for Travellers; in particular those who are autistic. I set up a blog with a plan of inviting autistic writers to educate us as a Traveller community; and a Facebook group with an autistic activist friend, Travellers in solidarity, with the autistic community to support building relationships and bridges between our communities. It is vital that we as the Traveller community and the autistic community support the rising of the Traveller autistic voice as it is missing within both our communities at present. I am not autistic; therefore I am not the Traveller autistic voice. I long for the day a Traveller autistic voice comes forward who identifies as both; believe me that day I will celebrate with them!
I want to thank everyone who reached out to me and supported the rising of the Traveller autistic voice; in doing so you reached out, not just to me, but to autistic Travellers. I will keep speaking up and searching for you. Please know you are loved and accepted. Travellers need you to lead the way.