In Dialogue: Rodney's experience

This was a letter written to me following my post about growing up with a disabled brother.

Dear Olivia,

Your experience carried an extra charge because of my adolescent friendship with your dad and also your location. The latter came as something of a heart-rending surprise. Thirty years prior to your Woodside Park experiences I was occasionally to be found with my brother in the same park, often on bicycles, sometimes with my mother, or, on more than one occasion, just the pair of us, maybe walking to Cissbury Ring to buy some Sunday essential. On these occasions there was enormous anxiety on my part which I hid, and, as I realised years later, which I never even recognised for what it was. When you have a sibling like Mark, or Harry, you become habituated to a life of disruption, adrenalin, apprehension (and excitement!) and this, over time, changes so much of the way that you grow up and perceive the world. Brough and your mother's Rona solution was admirable. When the three of you sallied forth, you were not charged with the protection of your sibling. Rona was. I wished I'd had that. Woodside Park all those years ago had its fair share of fears, people from my peer generation I dreaded bumping into. You say Rona was never embarrassed by him. My God! I was! My mother didn't drive and didn't want to, fearing Mark's back seat antics in an era before child locks. I remember taking trains and buses and in restaurants when he would act out in front of a disapproving and sometimes fearful public and I would try to distract my mother with ridiculously banal observations of things happening outside the window. Why? Because I was trying to protect her. It was exhausting! In fact I would characterise my childhood and my formative years as being adrenaline-induced exhaustion, excitement and guilt.

Just as with your parents, my sibling changed all their plans. I was born in Bangalore, India, where my father worked for a multi-national and when my mother had us both we were put down for U.K. boarding and, like you, I often wonder what our lives would have been like had Mark not suddenly regressed before our very eyes, changing their plans so that we returned to the U.K. when I was six. Would I have been an awfully smug Tory-boy, having been raised with servants and expat privilege? I do not know but I certainly don't believe I would have the liberal tendencies I have today. Is that a good thing? My answer is that it is, up to a point.

When I met Brough it was at the beginning of my first year as a day boy. For the previous five years I had been a boarder despite living only four tube stops away. We lived in a house in Woodside Park in a house that has long since been demolished. It had a large garden where Mark could let off steam and be watched. We had neighbours, a family of three that quickly became four. The eldest boy, David, was an exact contemporary of mine and we became firm friends. I was sent to Moss Hall and he went to St. Mary's.

During this time my mother's focus was entirely on Mark. In those days autism was largely unknown except for a few luminaries like Sybil Elgar and Lorna Wing. There was no provision. My father chaired the Autistic Society (NSAC as it was then).. The house was awash with bags of jumble which my mother sorted for for the new Barnet Charity Shop. All our acquaintances, outside family, were parents of autistic children. I was left entirely to my own devices. I responded in an entirely predictable, functional way. I disappeared down a rabbit hole of reading and playing the piano. Fortunately my birthday was during the summer break which meant I could side-step the horror of birthday parties.

When it came to the choice of the next school after Moss Hall my parents asked the neighbours where David was going. They said Highgate, so I was presented to the Headmaster and was taken entirely on my piano playing, so I was sent there as a weekly boarder, out of the way, despite the fact that it was only a few stops away on the tube. Every day I watched David being picked up to go home. I misbehaved constantly and got beaten at least a dozen times (which I didn't tell my parents about).

Five years later the entire side of the street where my parents lived was bought by a property developer and we moved locally to Finchley Central and I became a dayboy. I was now in the senior school which was a definite improvement on the prep school and it was around this time I met your dad who was in the same day house and we began to hang out in breaks and shared the tube.

"Rainman" was the movie that put autism on the map. Now everyone knows about autism. What Brough said to you after your unperformed ABBA dance is heart-rending, but there is no win-win in that situation. I remember performing at the Purcell Room. My parents had moved mountains so that they could attend (which, as with you, made me feel guilty). Unfortunately, my father was so stressed that all he could do was mumble something about parking and off they went. It wasn't until much later that I realised any victory of mine, be it in the swimming team, music or whatever, was not something that could be seen in isolation. My achievements 'crowded out' my brother's lack of achievement. Any small victory on my brother's part brought on waves of optimism. Years later my mother, in her nineties, said to me "We just thought you'd be ok." When I needed advice about what to do in terms of tertiary education none was forthcoming. The school assumed I would be advised by my parents so I had a year working and took up a delayed offer to do Russian and French at St. Andrews. During that year I began to take stock of my situation.

My brother's future looked really grim. In those days there were very few state-funded options other than ghastly mental hospitals like Shenley and Harperbury. I decided on a complete change of direction and turned down the Uni place in favour of qualifying as an accountant which, in those days, held out the possibility of financing my brother's future. So that's what I did and I hated it! You're right in saying that resenting things that go wrong makes for a miserable existence but there was no resentment at a conscious level. I was just miserable. The fact that things were eventually to turn out fine for me was pure luck.

You are much more aware than I was at your age but patterning works out at an unconscious level. I had a disastrous first marriage and after some spectacular panic attacks eventually found myself a wonderful therapist. This was all 40 years ago. I now realise that the experience of growing up with Mark has a profound effect on one's choice of partner. Not only is there an envy of those with a more functional upbringing (like David) but there is a sense that someone from such a background would not, as a partner, be able to embrace your experience. (They may even appear boring. After all, growing up with a Harry or Mark has its fair share of excitement). Then there is a sense that a Mark or Harry is a 'wound,' a vulnerability that you need any future partner to contend with. There is an unconscious temptation to 'trade.' My first wife had, as I thought, a not dissimilar dysfunction in her family. I bring my 'wound' to the table and she brings hers. We have an understanding and know best how to treat each other. Bingo! No! I then had a relationship with a barrister whose brother had Downs Syndrome. Awful! Then, of course, word gets out that autism has a degree of heredity associated with it. One asks oneself "Could I cope?" if that happened to me, given one's upbringing experience.

Finally, among feelings of unfairness, the adult in oneself looks at it all and realises that, given the deck of cards dealt, we could not have done any better than our parents.

I remember one holiday my parents took me on without Mark. He was left in a ward. I've blotted out exactly where. Throughout the holiday my heart ached. We never stopped wondering how he was. It was a terrible holiday. When we retrieved him he had been doped up, sitting alone in a corner. It had a profound effect on me. I vowed he would never have such a vile experience again. He's had a very happy life. I'll be seeing him next week.

There is a real need to have a forum for siblings such as ourselves. I am so conflicted when I see the parent of a severely challenged child tell the healthy sibling to embrace him/her and declare love. There is so much wrapped up in that scene. For years I sought some sort of understanding by volunteering to work in their world but realise now that this was not the right thing to do.

Rodney.