Autism pride day seems a good a reason to talk about my brother, though as he cannot communicate for himself it will necessarily be, as it usually has been for the last 29 years, myself trying to represent him.
The film “Rain Man” was a bane during my childhood. On one side it raised awareness of autism during a time when no one had a second thought to ask you to leave a restaurant if they felt the behaviour was not well mannered – by this we mean keeping still. The huge minus was the assumption that my brother being autistic had a gift of some kind beyond us mere mortals.
I had to explain to kids that there was a huge range of abilities for people with autism, and my brother mentally was on the far end of that scale though able bodied. He could not speak, much less add up numbers. He could remember faces but not names let alone read a telephone directory. He would never be able to make a phone call or take a message. He would not be able to cross a road safely – ever. He had severe learning difficulties and this was for life – his safety, well being and happiness would always be dependent on others.
But he can laugh and smile. He finds things funny, and loves to dance to his favourite pop music – no matter where he hears it and gets me to join in. His emotional intelligence is the one that makes him sociable. It has to be however on his terms. If he wants a hug for 3 minutes, then it is a hug for three minutes. He wants to be on his own, better give him space immediately.
He wants coffee at 3:30 am then it is coffee then, which he can never make himself. Severe learning difficulties mean exactly that – the ability to learn rules, consequences, manners and routines are out the window. Which, quite literally he once was when four and someone knocked on the door to say he was on the window tile roof ledge of the upper floor. My mother did not believe it as I rushed up the stairs. He laughed when he saw me, but was too terrified to make his own way back. So my nine year old self went out the window to bring him back.
When I started caring for him full time just over two years ago, the rapport we had before I went to university came back. I remember junior school teachers being concerned that I once said I wish I had asthma too so I would get some attention. This was misunderstood as jealousy – it was actually a feeling of being invisible in the world given the focus my brother needed.
In many ways I knew once mother could not cope I would become a family carer. So I lived my life – went to university, socialised and partied hard, travelled the world and met interesting people. Whether in local politics, national conventions or international conferences I have made my voice heard whether people wanted to hear or not.
A reason I emphasise to my mother the importance of blogging and social media is to avoid being invisible ever again. Besides, she does not want to discuss Syria or apostasy. Nor ever read my published articles – more on that can be found in my apostasy story. My hope is that with a personal budget soon I can have evenings and weekends free to socialise once more. Digital communication is a life line – and I am appreciative for anyone taking the time to communicate – but it is no substitute for a social life. Hundreds of miles away from the friends I know, need to make a new network of palpable people.
I watched “Rain Man” only into my young adulthood. Dustin Hoffman was excellent and the arc of Tom Cruise’s character interesting for how brothers bond. Though “What Is Eating Gilbert Grape?” rings more true for me. My brother would stay in a bathtub if you had gestured to stay there, even if it turned cold. The conflict between living your life and family. Leonardo, quite frankly you deserved that academy award then.
I have travelled so far with my brother, and it has been the most worthwhile thing I have ever done. I am proud of the charming man he is, and the dignity with which he gets on with his life.
Article written by John Sargeant on Homo economicus’ Weblog