Autism in Northern Ireland: A long way from acceptance (but hope is on the horizon)

I live in rural Northern Ireland, at the foot of the Sperrin Mountains, not far from the waters of Lough Neagh and an hour and a half drive from arguably the most beautiful place on earth, White Park Bay on the North Coast. My focus in this article will be on Northern Ireland, as that is where I was born and brought up. But this piece will inevitably relate to both countries on this island.

I am a late-diagnosed autistic female and mother of two neurodivergent children.  In this article, I will share some of my experiences with public services and political representatives, what they have taught me about autism, how we are treated throughout this entire island, and our collective hopes for the future.

In this piece, I am also recalling events as I internalized them, and it is generally accepted and understood that people on the spectrum experience the world differently. My interpretations of events have been distressing, confusing, and uncomfortable for both me and my family.

Childhood, Community, and Care

As a child, I recall being dreamy and I was often described as ‘too emotional’ or ‘too sensitive’. I would cry when I felt overwhelmed, and it seems I was overwhelmed often. I enjoyed solitude. I played with others, but I had no problems being alone (as a child with four siblings I, frankly, relished the break I got). I recall playing by streams, in fields, or in my mind. Referred to as a free spirit from quite an early age, I have to say that when my imagination is allowed to wander, it can be sublime, and beautiful. In childhood, as in adulthood the problems most occur when my world and Irish society clash. That is when things can go wrong or become dangerous.

As a person born into the Protestant community, the discrimination I have experienced because of my disability has been further problematized because of the ethno-nationalist or ethno-religious issues that persist in this country. The Good Friday Agreement may have been signed over twenty years ago, but I do not see Northern Ireland as a particularly peaceful place. Segregation and sectarianism continue to persist in these six counties. I am an openly disabled woman who is home educating both of her children without any support or assistance from any of our services or the government. The problems I and my children encountered at my old primary school were seen as a ‘protestant school’ problem, the status quo for the controlled schools’ sector.  

Prejudice and tribalism continue to run deep and are still a significant determining factor in how people will vote and how political representatives will interact and support people within their communities. The Emerald Isle is in a very sorry state.

But autism does not care about politics or borders, nor should the abuse and neglect of children be seen as a green or orange issue. I believe in a united Ireland—not only because of the absence of political division it would bring—but also because it makes sense to live on an island with only one government and one constitution.

My diagnosis

When I began to consider that I may be autistic I spoke briefly with my doctor who advised me not to seek an assessment as they believed I was “too successful” and “too intelligent” to warrant it. At that time I was suffering immensely; constantly confused by people, their behaviors, and by relationships in general. I wanted answers, so I went privately for an assessment, and the psychologist who assessed me stated that I was “clearly autistic.”  At forty-two everything began to make sense and so started the process of reframing my experiences, my relationships, and my life from a perspective of having a condition that affects your ability to communicate and socially interact. Everything began to make sense and then the grief and relief swept in like a tidal wave.

The psychologist who assessed me also stated that they received the most criticism for diagnosing people like me.

On this island, autism is seen as a pitied neurotype, and I find it unsettling to witness how medieval many professionals are in their knowledge of autism. Often, when people find out I am autistic they infantilize me, feel sorry for me, or don’t know what to do. This is worrying when we consider our neurodiverse children.

Autism- North and South

According to Autism Northern Island (Autism NI), one in twenty-two school-aged children are diagnosed with ASD, in America, those rates are one in forty-four, and in England, they are one fifty-seven. Many experts argue that ASD is still underdiagnosed, particularly amongst those who identify as women or non-binary, particularly by health and educational staff. In an article written by Dr Karen Saporito, they wrote “Autistic females are underdiagnosed, particularly in individuals without an intellectual development disorder. Gender bias leads to fewer referrals for females, later diagnoses, missed diagnoses, and misdiagnoses.”   In Northern Ireland, waiting lists and obstacles to assessment and diagnosis all suggest that our already-high rates are probably much, much higher.

I believe this because it took a lot before I even considered myself to be autistic. I also believe there is a link between transgenerational trauma and autism stemming from the troubles. That is where I think we need to be looking if we want to understand ASD better in Northern Ireland, and it may be helpful to view these statistics and rates through the lens of a population containing high rates of Post-Traumatic Stress Disorder (PTSD) and generational trauma.  

According to data collected in 2018, the rates of prevalence in the Republic of Ireland stood at 1.5% of the Irish population. And at the time, the rates of diagnosis were considerably higher in the North—quoted as being 2.9% in 2017/ 2018. When we look at the huge disparity in rates between the two populations we get proof of trans generational trauma, and the impact is worth investigation. Finally, there is a distinct lack of representation from autistic adults as role models.

Education

The education model used in Northern Ireland is often deemed problematic when dealing with those who are on the spectrum as it continues to segregate children at a young age by academic selection. Coercive education is still the status quo with religion still playing a significant role in how our younger generations are educated. Parents and carers regularly ask for help when dealing with issues such as school refusal, after school meltdowns, or after-school emotional exhaustion—things that impacted my youngest child. When I spoke to the principal of the school about my concerns, they accused her of lying. Because she was suffering silently, and being “good,” the school was not interested. This again highlights some of the common issues facing neurodivergent females and girls.

As a therapist and a late-diagnosed female I know this as “masking,” and it is regularly cited as a primary reason why girls are misdiagnosed or underdiagnosed.

I was also alarmed by how management dealt with child protection and child welfare incidents. In 2018, I organized a group of parents and grandparents—accompanied by a child—to meet with our Children’s Commissioner and recall our experiences. The child spoke about being locked in a cupboard at the (religiously integrated) school he attended. The commissioner seemed surprised but never followed up on our concerns. Even those who are paid to care often don’t seem to know what to do, or how to keep children safe. And we are all just expected to “get on with it.”

I have since been educating my children at home.

Health

It is well documented and researched that autism often comes with co-occurring conditions and that it can be difficult and costly for autistic people to stay physically, mentally, and emotionally healthy. The rates of mental health challenges in Northern Ireland are very high, and our suicide rates are the highest in the United Kingdom. Research also shows that all autistic people are at greater risk of suicide and mental illness and that the life expectancy of autistic adults is lower than for those without. I also believe there are greater risks to being abused, harassed, harmed, and bullied for those on the spectrum. Most of the mental and psychological issues I have faced have not been because I am autistic. They are derived instead because of the mistreatment others inflict because they are uneducated, and often too overwhelmed to not be cruel.

In 2011, Northern Ireland was also established as having some of the highest rates of Post-Traumatic Stress Disorder in the world. Trauma exacerbates autistic traits and further problematizes our ability to communicate and socially interact. Since the troubles, more people have died by suicide than were killed in the thirty years of conflict. Trauma may complicate relationships, as the ability to socially interact and communicate is affected by the symptoms.

I think my maternal grandmother may have been autistic. She was very sensitive, was considered unorthodox, and very eccentric in her choices. She had bouts of mental health challenges throughout her life—particularly as she aged. I know this condition did not start with me.

Many people here do not want their families to be associated with autism. The stigma needs to end, as the rates in Northern Ireland are high enough, yet it would seem the true rates are even higher.

She lived in East Belfast, worked hard her whole life, and was different.

Politics

Since returning to Northern Ireland in 2014, I became a member of two political parties in the hope of creating a more progressive country, But I soon left them both, feeling that my voice and opinions were discounted by the local branches, and I now see these parties as slight variations of the same problematic structures that continue to drown out and ignore the voices of those who are different. None of the big parties “walk the walk,” about autism and disability rights, but Sinn Fein at least “talks the talk,” and so I met with Colm Gildernew, Sinn Fein’s Chair of both the Health Committee and the Members of the Legislative Assembly (MLA) for Fermanagh and (the southern part of) Tyrone counties. They had just passed a bill that walked the walk a tad, in the battle to improve things in Northern Ireland.

When asked how he saw autism, Gildernew mentioned family members—nephews sprang to mind when he stated, “The first thing I think of is creativity.” He spoke about how many families and caregivers are feeling drained and exhausted by the battle they face for loved ones to receive appropriate care and support. He described it as being a “war zone” for economically-challenged citizens, adding that services need to improve on “both sides…we need to work better across the island.”

Prioritize, normalize, destigmatize and empower

Autism is a huge issue here, but it is only one issue. How autism is discussed, and considered reflects the country, and not the people diagnosed with it. But when I arrived at Stormont for our interview, Gildernew was in the chamber discussing a care facility that had been de-registered as a charity (because of concerns relating to the care it was supposed to provide for vulnerable children).

We are an island often connected by storytellers. And it is through sharing our stories that we become educated, connected and wherein we can create healthy communities. In my work as a Neurodivergent Therapist, I hear stories all the time. I hear of trauma, pain, and suffering and I also hear stories of beauty, love, and hope.

I am fortunate to have a good life. I am from a privileged background and that has helped me tremendously with this condition.  I can be productive, I am well educated, I have good people around me, a few good friends, a beautiful home and I have created a meaningful and fulfilling life doing things I enjoy. My needs are met, but our health should not be determined by how much our parents earned, or what social class we belong to.  

I do not believe I am disabled because of my neurology; I believe I am disabled by the society I live in. I love the way my brain works. I would not change my neurodivergence for the world, and I want my children to thrive, and be accepted, in this country.