Asperger Syndrome and me
A story about a beautiful human
As I hurtle towards my 40th day in Coronavirus related isolation it’s really started to dawn on me the gravity of the situation. Not just because of the unprecedented scenario of the world locking down but due to the gift of modern media that enables normal folk like me to see what is going on at the most severe end of the crisis.
It is that view into the severity that has made me extremely concerned for the wellbeing of my brother James. James has Asperger Syndrome and a number of other complications relating to a deficiency with his 18th chromosome known as ‘18q Disorder’ which means that as well as Asperger Syndrome James also suffers from a number of other conditions such as (but not limited to) Epilepsy, brain damage, Asthma, deafness in one ear, Oesophagitis, and, a collapsed lung.
It is the collapsed lung and Asthma that concerns me the most, meaning COVID19 is pretty fucking lethal to James.
It has all caused me to reflect on James, our relationship and how important he is to me, how much his spirit drives me on and how much I love the dude. He is 10 years older than me and we haven’t always been great friends, that is to say, that when I was growing up I gave him a torrid time and was an absolute little shit to him. Which makes me wonder, have I ever apologised for that? 🤔.
Anyhow, I once stumbled across an 18q disorder Facebook group which had lots of parents of children with 18q. I remember how much they valued my input on James’s life.
James is going to be 45 this year, so I thought it was time I put some of all of the stuff whirling around my head down onto paper (so to speak)… And in true Medium style, of course, I have nested it nicely under headers (I’m quite new here, can you tell I am trying to fit in?).
It’s a miracle that James is here
James was born on November the 5th 1975 in Ascot hospital. As was standard at the time he was separated from our Mum and put in a room with other babies in the next room.
He cried non-stop, all night long much to the distress of our Mother, who as a first time Mum was dismissed by the nurses as being over-cautious and had to be physically taken back to her bed. She eventually managed to escape their lockdown to make a phone call to James’s Dad who persuaded the doctors to take another look and he was taken to the intensive care unit, although they claimed this was only to calm our Mother.
It later turned out that James had suffered a collapsed lung, but our Mother only knew because a nurse had taken her aside to tell her.
Finding out about James’s other challenges came as a slow process that took over a decade to get to the bottom of. In fact, we didn’t know about his 18q chromosome deficiency until he was 13 years old.
The family expanded
22 months after James was born my other brother Roland was born, this time without any complications.
By this point, James had been pretty slow to develop. He didn’t really talk or walk, and, in time Roland and James actually started to develop together. Learning to walk and talk at the same time.
Having Roland around was a great thing for James as it gave him someone to align his behaviour and development to.
Roland also had the patience of a saint, even from a young age, he was very understanding of James, even through the tempers which James had begun to become famous for.
About those tempers..
As he matured into his teens he had a lot of issues with tempers. He would flip and nothing would work to calm him down. They were intense tantrums and he would usually end up storming to his room. He would ALWAYS come down a little later and apologise and ALWAYS feel guilty and say he didn’t understand why he had got so mad.
This behaviour was very Jekyl and Hyde, one minute he was fine, the next furiously angry threatening to pull paintings off of the walls and then after calming down in his room for a short while he’d be back to the James we knew and loved again.
How many people ALWAYS apologise when they are in the wrong? How many people have power over their pride to do that? It’s an amazing trait of James.
These days James has far fewer tempers. I’m not entirely sure if it’s because I am not around him as much to wind him up, or whether he’s matured. Perhaps both.
The only fight
The only time in school that I got into what you could call a ‘proper fight’ was in defence of James. The school ‘hard man’ let's call him ‘David Jones’ tried to seek some amusement in James’s expense. I won’t repeat what he said but it sparked a reaction in me that I had no control over and the very next thing I knew he was shielding his face whilst curled up on the floor with a rather bloody nose.. I remember coming back to reality being terrified of not just the repercussions from David, but the trouble I was going to be in with the school. I was summoned to the headmaster's office, A gigantic room of sprawling bookshelves and antique furniture. The headmaster an appropriately named gentleman called Mr von Zeffman peered at me from across his unreasonably large sized desk and said “I believe you had an altercation with Jones.. What happened?” I responded in a voice that seemed to come out a few octaves higher than my usual voice, trembling part from fear and partly because I felt like I was going to burst into tears “sir, he called my brother a f***ing m***!” Mr von Zeffman responded “and so you decided to punch David in the face for this action?”… “yes” I replied timorously “Very well Whyte, that will be all..” and I got up to leave assuming that my tenure at Chilton Cantelo School had come to an end (there was a zero-tolerance policy to fighting and pupils had been expelled for more minor offences in the past), but despite me feeling on edge for the rest of the day and subsequent week that was the last I heard of the matter.
At the time I was somewhat baffled as to why there were no repercussions for me, but, in hindsight, Mr von Zeffman probably didn’t have a lot of time for David. Also, James was actually part of a group of 8 students that joined the school when it first opened, so, I am sure Mr von Zeffman had a soft spot for my sweet brother.
Growing up with James
It wasn’t easy growing up with James as a brother. James’s autism meant that he was a mischievous child’s worst nightmare. If you did something wrong and James knew about it there was no chance of him keeping it quiet — you were instantly in trouble, but, not for the same kind of reasons that kids normally tell the person of authority some bad news to get you in trouble, with James it was always just about doing what is right and wrong. James can’t lie or spin the truth. It’s against his nature.
All of that said, I was an absolute horror to James when we were growing up. I used to make it almost a sport of winding him up. A side effect of 18q is that he has a pretty short fuse. I’ve lost count of the number of times I’d annoy him to the point of him chasing me around the house.
My normal place of safety was to run to the toilet and lock myself in. This reminds me of one of my favourite memories of James, which was that one time where I’d taken solitude in the bathroom I could hear James outside the door making footstep sounds to try and fool me that he had walked off. I shouted out to him
“James.. I know you are still there..”
To which he replied:
“No I’m not!!!”
This was a story that I recited on my wedding speech when thanking James for being my best man. He, of course, took it in the best spirit.
Mum and James
My Mum and James are like best friends. James has always lived at home and my Mum has devoted herself to looking after James.
From the outside looking in they probably look like an old married couple. They definitely act like it. Going everywhere together, constantly bickering at each other. But, my Mum is more than that to James, she (as she has done for Roland and I as well) has dedicated everything she does to us, whether it be taxi services to sports events or working different angles on things we wanted to happen, she is a doer, and a maker of things for us.
One of my greatest fears in the world. One that can stop me dead in my tracks and fill my heart with dread, worry and guilt is the thought about what will happen when our Mum gets to the age where she passes on. It’s not so much what will happen from a care perspective, but I worry about James’s heart. I don’t know two people that are closer and more dependent on each other than my Mum and James.
Hard-worker
Whilst James does sometimes lack the initiative to be a self-starter if you give him a task or a job he will grind away until it is complete.
Over the years he’s had a variety of jobs, from where our father had an F1 News magazine of which James was listed as a contributor due to his uncanny ability to quote sports stats like an encyclopedia.
When he attended a college for people with special needs he worked in a restaurant as a waiter.
Later in life, he worked in Asda doing tasks such as keeping shelves stocked. One thing that was always wonderful to see was the reaction James would get whenever I visited the store with him when he was off duty, all of his colleagues would be delighted to see him.
Our other brother has a wedding venue in Yorkshire called Saltmarshe Hall, James worked there in the gardening team and had a ton of responsibilities such as looking after the lawns. Again, everyone loved James on the team.
Someone once asked me what it is that makes everyone love James so much, and I think it’s really simple, it’s everything in this post, his kindness, his self-awareness and how gentle he comes across.
These days he works in the British Heart Foundations shop in a small town called Shaftesbury in Wiltshire. He works on the til which he enjoys. It means he gets to interact with a lot of people.
Uncle James
He is an uncle to 5 children in total. My brothers 3 kids who live nearest him absolutely adore him and he adores them. They play endlessly together. He has lots of patience.
With my children even though they don’t get to see him as frequently, they adore him too. My youngest son Hugo is a little shy, but James has a natural ability to get Hugo to warm to him and usually within minutes they are best buddies playing together for hours.
Sports and Bowls
James is an incredible bowler.
This was, of course, something that my Mum discovered with James whilst on a family holiday and upon discovering James’s ability doubled down on it by joining the local bowls club and signing James up for every league and tournament going.
He progressed well and soon found himself playing for the club and in some instances the county.
On top of bowls, he is sports-mad. Loves pretty much all sport. The only sport he doesn’t like is boxing, which I think says a lot about his character.
One thing that amazed me recently was how James was unable to talk about any sports teams he didn’t like. He had to really think long and hard when I asked him for a team he didn’t like and his answer was a team who had poached his team's manager, so there wasn’t really any malice in it. Which any football fan will know is an unusual trait.
The kindest of souls
James genuinely doesn’t have a bad bone in his body. He is truly the kindest human I have ever met. It is almost like the part of his mind that processes anything unkind is missing. He is simply incapable of doing anything that will have a negative effect on the emotions of the person he is interacting with.
Which is interesting to me, because my favourite definition of emotional intelligence has always been that the more someone is aware of how their actions impact other peoples emotions the higher their EQ, but, because of James’s autism he doesn’t necessarily have what you’d class as a high EQ.
It’s not just mental kindness that James has. He is generous too. We used to play computer games growing up together and whilst they were generally ‘joint’ presents for Christmas, James would usually end up funding many of the games we’d play together, even the ones he didn’t like.
If I wanted to buy myself something new and didn’t have the funds to do so I would come up with a harebrained scheme to sell my half of the games console to James. He always cooperated and played along with my schemes, even if most the time it meant the console stayed in my room and I continued to play on it. I think James always knew he was just helping me out.
When I was 12 I started racing MINI’s in a series called Autograss. It was a pretty fun thing to as a kid and James took his position as ‘assistant mechanic’ to my Dad (who was not a mechanic, so it was arguable as to whether James should be chief mechanic) very seriously. One thing he did that will always stick with me is how he started saving money every week from his allowance to donate towards the development and maintenance of my car. Amazing.
Is there anything I’d change about James?
I know this goes against the spirit of this post, but, YES!
His bloody singing. He is always bloody singing.. He has a TERRIBLE voice!
If he isn’t singing then he is humming and that’s equally as bad.
Of course, our Mum can’t sing either but likes to sing just as much as he does. They’re like the worst double act you can imagine.
And they take great offence if you dare to tell them about how bad their singing is (even though they know!).
The running joke is that they sing like birds… Crows.
Nicknames
James has always had nicknames which have always been used in the spirit of love. His first nickname was ‘Bone-Body’, because he was so skinny. Just like a skeleton. He’s still called ‘Bones’ for short.
His next nickname was ‘The Clanker’ — because he was so clumsy and always bumping into something or breaking it.
Finally, I call him ‘Slim Jim’, because he’s become quite ‘portly’. The irony, I know.
Reflecting on life with a brother with a heart of gold
There’s this somewhat surreal thing that occurs with me anytime I think about James’s place in this world, how much I adore him, and or just think about him in general, and that’s that I get quite emotional.
I think it’s because I’ve seen for decades how James takes challenges in his stride without ever complaining. He just sucks it up and gets on with it.
In today's world we idolise many, whether it be sportsmen or celebrity, and that is totally ok, but for me, there is no better idol in my life of someone that embodies the wonderful positive spirit of the human race.
That is my brother James and I am honoured to know him.
