#MentalHealthWeek: An Open Letter to Adrienne Murphy, On The Struggles of Coping with Autism in the Family

But it is important not to lose sight of other elements in the overall equation. Central among these is the reality that where serious mental health afflict individuals, families tend to suffer too, in a way that is hugely disproportionate. There is a feeling among those who are living with people, who are afflicted with more extreme cases of schizophrenia, autism, bipolar disorder, borderline personality disorder, that the State in effect dumps the entire responsibility for coping and managing what can be terribly difficult and often traumatic situations back on the families.

That was an important theme in Hot Press editor, Niall Stokes’, open letter to his colleague Adrienne Murphy, whose son Caoimh has been diagnosed with severe autism – and who is battling against State inertia, in trying to find a liveable solution for Caoimh – and for the family.

Read the letter below:

Dear Adrienne.

It is hard to know where to start. This, of course, is a feeling with which you and I are both familiar: staring at a blank page before finally figuring out how to get the engine turning over, the writing juices flowing, the words swirling out of the inner mind’s eye and onto the screen or the page. But this is different. This is very different.

We have known one another for over 20 years. From the first time we met, I knew that you were – that you are – a very special person. It wasn’t just that you were beautiful: there was something special in your spirit; in the light that shone in your eyes; in the laughter that came so easily to you, in what might have seemed then like a kind of innocence; and in the blood-quickening conviction that powered everything you thought, said and did, from inside.

I hope that doesn’t give a false impression. You were never a zealot. There was always an open-ness about you, a willingness to listen and learn, and a fine sense of adventure, which reflected a deep-rooted and wonderfully attractive lust for life, and for its best, most exciting possibilities. But there was also a maverick, unconventional, devil-may-care aspect to your approach to the business of being human that I loved then – and still love.

Among all of the great people I have been privileged to know – writers, musicians, actors, film directors, comedians, activists, broadcasters, intellectuals, teachers, environmentalists, entrepreneurs, visionaries, runners, footballers and even the occasional politician among them – you have always stood out as a genuinely free and generous spirit, with, at once, a beautifully fierce and joyous way of looking at the world and everything that inhabits it.

As an editor, I always knew that if I asked you to do a job, I would get integrity, whole-heartedness, great kindness, and a wonderful sense of decency in the way you went about it. But I could also rely on freshness, vitality, an underlying compassion; a facility with language; a desire to write and in doing so to talk to humankind; and an original, unique and powerfully compelling way of looking at things – and at people.

We are very different. I am much more naturally cautious. But beneath the surface, there was and is, I think, much in common. A hatred of patriarchy. An instinctive hostility to the crude and self-serving moralising of the Roman Catholic Church. A complete lack of interest in the institutions around which so many people organise their lives and those of their families: marriage, religious-run schools and chasing down a career or job. Your philosophy was based on a rejection of institutions. I had been on that flight for a long time.

I remember now, the piece that you wrote from your great adventure in South America, with your partner Dara and your first son, Fiach. There were beautiful pictures from that journey: I was struck back then by the happiness they captured. But what I recall even more vividly is the story of three people venturing out into the great unknown, and living life to the full in a different time zone, because that seemed to be the very best way to live it. And almost certainly it was.

RAGE AND FRUSTRATION

In the cruel, daily grind of what we do, there was never enough time to hear all of the stories as your life took different twists and turns. The birth of your second child, Caoimh. The split with Dara. The growing awareness that Caoimh was different. The diagnosis of autism. The struggle against an unsympathetic State machine. The demand for the kind of support, and in particular the education, for Caoimh, which makes all the difference to those who are struggling with this extraordinary, terribly debilitating condition.

It was incredibly tough for you, for Fiach and for Dara – but in so many respects you in particular gave your life to Caoimh. And experiencing first hand how ill-prepared the State was, and is, to deal with a condition that few understand, you became an activist on his behalf. You could not have done more for him.

Throughout all of this you wrote for Hot Press. Along the way, we worked particularly closely on a series of articles about the fluoridation of the water supply in Ireland. Collaborating on those articles – which must have run to well in excess of 100,000 words – I saw you in greater close-up and my admiration grew. You were passionate, intense, questioning. You cared deeply and worked hard, late and long, around the onerous commitments that you had to Caoimh, to get the pieces finished against the odds. As a fellow worker, I couldn’t have asked for more from you.

From some storms, however, shelter is especially hard to find. I know that, over the past few years, Caoimh has absorbed more and more of your time. There was good news. You secured a therapy dog for him – a huge and comforting presence but one that you had to take care of too. It was a help, but not a solution.

I realised, by now, that Caoimh couldn’t speak; and that he could be gripped by feelings of rage and frustration, spilling over into aggression. And that this was becoming more and more difficult to manage, the older he got. So when you told me that he had developed the ability to communicate via finger-pointing letters, using the Rapid Prompting Method, it seemed like a whole new avenue of hope was opening up for him, and for you.

It was a vindication of every ounce of belief you had invested in your campaign for him, and for every child who shows signs of autism. The working assumption had always been that people with autism are of sub-standard intelligence. You showed me what Caoimh had written and it was stunningly impressive. Here was a boy who couldn’t speak, who displayed the heart of a poet. I was overjoyed that you had been proven right.

CHEMICAL EXPLANATION

It feels like that was only a matter of weeks ago, Adrienne, though maybe in truth it was many months. Days and weeks race by and all the things we want to get done pile up as the business of life drags us remorselessly into the future.

And then the damn broke. You posted a video on Facebook appealing, pleading, for support from the HSE and from the State. It was one thing dealing with the explosions that are part of autism when Caoimh was a young boy. Now, at the age of 14, he is almost a man: big, strong and capable of hurting people badly. And, as you have explained publicly, it has happened, and threatens to happen again at any time. You – and Caoimh – are always just one explosion away from mayhem and danger.

It is a terrible predicament and it was clear from the crushingly sad video the extent to which it has taken its toll on you and on your own health. Throughout, you have shown what anyone who knew you well was always aware that you had: a huge capacity for love. At the heart of the message that you put on Facebook was your love for Caoimh.

It is a brutal burden, the extent to which the condition – with which Caoimh himself has had to live – has imposed itself so mercilessly on you and on Fiach. As a family, you are forced to exist in a state of constant fear, apprehension, anxiety and vigilance. And what support do you get? What is clear from your video is that the response of the State in situations like this is totally, irresponsibly, shamefully inadequate.

Historically, the treatment of people with mental illnesses, and conditions like autism, in Ireland, was callous and wrong. So many were dumped in what amounted to psychiatric prisons, and the keys were effectively thrown away.

When people to whom I was very close became ill, I sided with them, and with the Scottish psychiatrist R. D. Laing’s contention that it was society that was crazy and that psychosis was a valid response to it. There are differences, of course, between conditions like schizophrenia, bipolar disorder, ADHD, autism and the other major mental illnesses. But they have in common that living with severely affected people has the potential to shatter and ultimately to destroy the lives of family members.

It is, as your video eloquently demonstrates, vital that we acknowledge this and try to address it. Seeing schizophrenia at work in dramatic close-up over an extended period, I came to the conclusion that R. D. Laing was wrong – that, triggered by who knows what, there was a chemical explanation for it. And I suspect that this is true, to an extent, of most forms of mental illness. Which is not to imply that they cannot be addressed. Nor that people cannot themselves take on particular mental health challenges. They can.

The astonishing thing is that the brain works so well so much of the time. Things go awry in humans that manifest themselves as life-threatening physical illnesses, like diabetes or motor neuron disease.

They surely go wrong on occasion in the brain, or the mind, too, in a way that affects our ability to live comfortably in society and to communicate.

The effect of the shift that occurred in the approach to mental illness, starting in the 1960s was a good one: people should never have been dumped wholesale into hospitals, drugged to their eyeballs and left to rot. That is what happened.

BEHIND CLOSED DOORS

The idea of community care, of re-integrating people with mental health issues, of washing away both the guilt and the stigma associated with illnesses of the mind, was and remains a huge institutional step in the right direction.

But what it means in practice – and I know this from personal experience – is sadly that the burden is, to an impossible extent, thrown almost entirely back on the family and on those who live with boys, girls, men and women, who are bipolar, schizophrenic or suffer from severe autism, anorexia or depression.

This is so profoundly wrong, and unfair, that it beggars belief that, as a society, we allow it to happen. But we do. You could see, Adrienne, the years of accumulated emotional wear and tear written across your face on the Facebook video. You have been twisted, turned, stretched and nearly broken by being the one who above all has had to carry the burden of a condition that the son you love has been misfortunate enough to experience.

Though no one can really know the true depth of it, the pain you feel, the sense of being abandoned by the system, and the anger that all of this must induce, are understandable. What you have been through is life at its cruelest.

It is no consolation to know that you are not alone. All over Ireland, there are other parents and families whose lives have spun into complete, disastrous turmoil, caused by mental and psychiatric illnesses that are too often simply impossible for anyone to manage over the long term. No individual or family is wrong here. But the response of society and of State services clearly is. This is not to say that knowing where to go is straightforward: dealing with serious mental illness represents a desperately difficult challenge, on every level. But we must, as a people and as a society, act urgently to take the hellish burden of managing these illnesses off the shoulders of individuals and families, and find a way of sharing it across the many.

This will cost. It has to. And solutions are not easy. How can they be? But your experience with Caoimh highlights something deeply wrong with the way we think and operate as a society.

Your individual case demands an immediate response. But the wider issue of how we treat individuals, who are struggling with conditions that are capable of destroying their own lives, and those of the people around them, has to be addressed.

How we respond to it is a measure of our civilization – and so far it is a test we have failed. To allow it to continue in this vein is an abnegation of our responsibilities to one another.

So much of all of this occurs behind closed doors that it is a hidden crisis. You have brought it out into the open. And as anyone who has ever lived through an experience like yours knows, in all justice it cannot, should not, must not, be permitted to continue.

If we want to be the best in the world at anything, let it be this: caring for those who are grappling with the most serious and debilitating mental health problems.

In the meantime, I fervently hope that there is light at the end of the long dark tunnel into which you have been facing for so long, Adrienne. No one deserves peace and respite more than you.
– Niall