By Rose Mairie Maughan.
Before I had my son, as a Traveller activist, I thought I was good person, a good human rights activist in solidarity with all struggles – but there was one I could have been more supportive and aware of; that is, the Autistic struggle.
Before he was diagnosed I thought I knew what being Autistic meant but in reality I actually knew very little. After we got his diagnosis, I learned a great deal about being Autistic from reading and training – but the real learning came from my son and the wider Autistic community.
I learned that autism is a neurological difference impacting on how an Autistic person sees, feels and responds to the world and how they communicate. My little boy taught me what being Autistic really means and opened my eyes to the Autistic struggle, which has many similarities to our struggle as Travellers.
For example, the Autistic community suffers social exclusion; lack of acceptance and understanding; discrimination while trying to obtain employment and services; they are often viewed as ‘broken people that need to be fixed’ and are forced to live in a world that is not sensitive to their needs as Autistic people.
Some Autistic children suffer serious abuse, are abandoned to the care system and even killed simply because they are Autistic, misunderstood or not accepted by their parents. Some parents search endlessly for a ‘cure’, but there is no cure because autism is not a disease.
Autistic children are bullied, and currently there are hundreds of Autistic children across Ireland and the UK with no school place for next September. Most are waiting for vital therapy and some are on waiting lists for up two years in many parts of Ireland. Just like us Travellers, due to this oppression and lack of acceptance, the Autistic community has a high suicide rate of nine times higher and a life expectancy of 54 years, something that is seldom talked about and needs to be addressed.
Once my eyes were opened up to this struggle for acceptance and human rights, my heart broke for the Autistic community and for my son – not because they are Autistic but because of the abuse, discrimination and oppression they are forced to endure.
As a part of my journey of learning about autism, I knew that I had to try help as an ally, not just to create a better future for my son but for all Autistic Traveller children and the wider Autistic community. I noticed many more Traveller children being diagnosed with autism but as a community we were not talking about it or the issues these children and their families were facing.
I started to think: where are the Traveller Autistic adults? How come I had never met one? Surely there are Autistic Traveller people who have struggled through life without a diagnosis or suitable support? That’s when I decided I had to create more awareness and acceptance within our own community. I wanted to start the discussion as a community.
Since his diagnosis, I have been creating awareness mainly through social media as I am on a career break at present. After spending many years working within Traveller organisations, I am now focusing on investing in my son’s development. Recently I started a blog inviting in Autistic voices to educate us on what being Autistic means and how it impacts their lives, as they are the experts – not me, and not professionals. All too often marginalised groups, such as my own, are the subject of studies but are left out of the conversation and this was something I did not want to practice myself.
Utilising the information gleaned from my consultations with Traveller parents, Autistic Traveller adults and the Autistic community, I gave a presentation on ‘hearing the Traveller Autistic voice’ to the Seanad on July 9, 2019, which was the first time these voices and experiences were ever mentioned in terms of Traveller policy.
I am ashamed to say that if my son hadn’t opened up my eyes to the Autistic struggle, I may not be doing what I am now, working as an ally to Autistic Travellers and the wider Autistic community. Many Travellers and Autistic people thank me but really the thanks must go to my son as he is the reason for the positive change occurring within our community in terms of us talking about being Autistic, and Traveller Autistic issues being named and discussed in the Seanad for the first time ever. He is the reason for the growing collective action between Travellers and the Autistic community; for bridges being built between our communities; and for a greater awareness and acceptance within our community. What a massive achievement for a little boy of six years old!
The most important lesson I have Iearned from the Autistic community is that it is their preference to be referred to as Autistic rather than as ‘having autism’. This excellent video explains the reasoning perfectly and I would urge everyone to watch it; words really do matter and the way that we use them has an enormous an impact on the way that Autistic people are viewed.
If people are referred to as ‘having autism’, then autism itself will always be viewed as a disease, an illness, something that can and ought to be fixed – as though Autistic people are in some way deficient. This couldn’t be further from the truth: Autism is a part of a person’s identity, much as my ethnicity as a Traveller is a part of mine and should therefore be viewed as such. Unless and until this happens, then disgusting and dangerous practices such as forcing Autistic people to drink bleach and Applied Behaviour Analysis (ABA) ‘therapy’ will continue to be promoted.
I was shocked and appalled upon discovering that Autistic people are continuously forced to defend their existence and their legitimacy by lobbying for the end of these extremely dangerous ‘cures’ for Autism. There is a growing movement of Autistic people and allies protesting the use of MMS bleach, where parents actually force their children to ingest bleach, a truly horrific practice by anybody’s standards.
This bleach is banned in Ireland; however, it is still being used and promoted, primarily online. Unfortunately, under the guise of ‘free speech’, a promoter of this abhorrent practice has been invited to speak at a two-day event in Waterford in November. While they may choose not to speak about this particular, well-documented view of autism at the event itself, their presence is nonetheless very distressing for the Autistic community and its allies. Free speech is one thing; promoting misinformation and pseudo-scientific quackery that is physically damaging to Autistic children is quite another.
The Autistic community are also calling for the end to the extremely damaging ABA therapy, which is nothing short of conversion therapy, trying to make the Autistic child ‘less Autistic’. Unfortunately although a lot of today’s therapies claim not to be ABA, the principles are the same, attempting to alter certain Autistic features such as increasing eye contact, which Autistic adults will tell you is very difficult to do at times and actually not necessary for effective communication. Many people listen better and process what is being said without having to give eye contact.
If we continue to force people to undergo harmful practices and to change fundamental aspects of their being in order for the rest of us to feel more comfortable, then we’re not only letting the Autistic community down, we are letting ourselves down. As with other minority communities, it is up to us to learn from Autistic people how we can challenge what we think we know about autism and adapt ourselves accordingly.
Below are links to Autistic led groups, blogs and pages where you can learn what I have learned. I hope you listen to the Autistic community and, like me, become an ally to them standing in solidarity and supporting the rising of the Traveller Autistic Voice.
Rose Mairie Maughan is a human rights activist working within the Irish Traveller Movement since 2004. Follow her blog here.
Facebook group: Irish Travellers in solidarity with the Autistic community
An autistic person’s view of the anti-vax movement
The ableist history of the puzzle piece symbol for autism