Uncle Connor: A Story of Autism & SADS

There came a point a few years ago when the question "Do you have any brothers or sisters?" became a difficult one to answer. The answer's obvious really, I do have a brother, one I love very much, but since January 2010, I don't have a brother anymore, I had one - and that's where a simple question (by an acquaintance who's just trying to make small talk) can become tricky.

Today would have been my brother, Connor's, 22nd birthday, so it seemed fitting to write this post now, especially as Archie has his name and one day, he will want to know all about his wonderful Uncle. Just under 4 years ago, I submitted a story to CRY (cardiac risk in the young) and it feels like the right time to update that story and share it once again.

"My brother was born on October 20th, 1992, when I was aged 4. From early on in my brother’s life, my parents knew that something was wrong, just little things, such as a lack of eye contact, and a different kind of cry to the one I had as a baby. At first they thought he might have trouble hearing, but that was soon ruled out, and as Connor grew up, they continued to notice a difference in him.

At 5 years old, Connor was diagnosed with severe autism and learning difficulties. There are many different symptoms for autism, such as a lack of social skills, talking later than usual and hypersensitivity to sounds and lights. To find out more about the signs & symptoms, visit the National Autistic Society website.

It goes without saying that we all love my brother, more than is imaginable, but growing up, life could be a complete nightmare at times. My brother would repeat the same phrases over and over again, and get distressed when no one replied. He’d often swear when we were out, earning dirty looks from passers by – happening so often that at one point we made a T-shirt for him, saying “I’m autistic!” just so that people could begin to understand and not glare at him as if he was just a naughty child.

From the age of 10, Connor’s behaviour began to improve immensely, but before then life could be extremely difficult for us all to deal with, and for my parents especially. A tall, well-built helper named ‘Melvin’ would have to accompany my family for the school drop-off for fear that my brother would hit my mother while she was driving and cause an accident. Connor also went through a ‘plate-smashing’ phase where on one particular day, 3 of us (all women) had to try and hold him back with great difficulty, just so that he wouldn’t break into the kitchen and smash anything else. He could be prone to having major tantrums when we were out, wiping out whole displays in stores, earning us glares once again from those who just didn’t understand Connor’s disability.

From an early age (primary school), I would look out for my brother (who at the time was in the infants school next door). I remember one day in particular, 2 girls were pushing him around on the field and I happened to be walking by and told them where the hell they could go. It wasn’t long before the staff could no longer handle Connor in a mainstream school and he moved on to a school for special needs that suited him much better.

I have always, and will always, love my brother, but I never had to deal with the immensity of struggle with him that my parents had to. I had friends and school to keep me occupied, as a teenager I was rarely home – I could get away from the hassle of a home with an autistic family member. I will never, ever know where my parents get their strength. They never wavered in the constant battle of caring for my brother – only thinking of residential when times got extremely hard, but never going through with it, just needing someone, somewhere to offer some help. I wish I had the words to express what they put up with and how incredible they are, no one will ever inspire me more than they have and continue to do so.

On August 29th, 2010, my mum was diagnosed with breast cancer. She found a lump and after several appointments, got the terrible news that she had an oestrogen-fed cancer in her left breast. Needless to say, I was the worst person that could’ve gone with her to hear that news. I burst into tears at the mention of the ‘C’ word, and I regret it to this day, I must have terrified her, I wish I’d been stronger for her. I won’t go into the details, but she didn’t handle the news very well (as most of us wouldn’t) and for a while, the care of my brother was left with me and my dad.

A few blasts from the past

My poor brother, a lover of his routine – I just hope that he didn’t suffer the stress that we all took on throughout that period. He could never understand the severity of illness and death (part of his autism) but I’m sure he knew that something was wrong, he’d just have no idea what. He asked for Mum daily – for the first time in his life she wasn’t around and he didn't understand why. It was an extremely hard time for us all, for Mum most of all, and I hope she knows that no matter what happened, we love her, and know that we can never understand what she went through because we didn’t have to live with that terrible illness.

My dad was incredible, as the main breadwinner, he had to sacrifice work just to make sure he was there for Connor and I. He’d cook our tea, help us, do everything he could for us both and he never ever made me feel guilty for wanting to go out and see my friends, or boyfriend, even though he could've probably done with the help and company. He tried as hard as he could to make life feel normal for us both and I know that he grew extremely close to my brother in that time.

Another thing you'd find about Connor, he’d never know the difference between night and day. If he fell asleep at 8 and woke at 11, he’d assume it was morning. Pretty sensible when you think about it. Every time, without fail, my Dad would take him out for a drive in his van, whether it was 9pm or 2am, just because that’s what Connor wanted and loved to do. I can’t express enough that my parents did everything for my brother, there’s nothing more they could’ve done to give him a better life.

My brother was 17 when my mum was diagnosed with cancer and I was 21. He’d grown into a wonderful person, his behaviour had improved and we were finally able to give him big hugs and kisses (those with autism tend to shy away from physical contact), and he was a pleasure to be around, winning best student at his school a number of times that year. As long as he had his Disney bag and his bundle of pictures (we would have to print him pictures of our family and things that he loved for him to carry around), he was happy.

One of my favourite memories is of Christmas Eve, 2009. Connor loved Christmas, more than anyone else I know, and as a young boy, we’d have to make sure to wake up before him otherwise he’d open all of our presents, not just his own. It was a stressful time when he was young, dealing with the tantrums he’d have if we couldn’t set up his toys fast enough or find the correct batteries, but as he grew older he'd matured so much that he’d wait for me to come down in the morning before he even touched started opening presents. I digress, it was Christmas Eve and we’d never had chocolates on the tree before as Connor tended to eat them immediately, but this year we sat together and I told him, “Connor, we’re not allowed to eat these until after Christmas, ok?” (besides the sneaky two we ate while decorating the tree) he nodded, and he didn’t touch those chocolates.

On Wednesday 6th January, 2010, it snowed heavily in our town, so much so that we were unable to drive, and whereas I’d normally have been at my boyfriend’s 40 minutes away, we were snowed in. We decided to take a nice walk in the snow to visit my Nan, 20 minutes away. We all went to sleep that night without a care in the world, Connor banging his fist on the wall as usual, saying “Bad, naughty ..” (then we had to say dangerous) – these are the phrases we had to repeat to him when he used to playfully touch strangers in the street for a reaction.

It was 2 weeks before my mother was to have the mastectomy that would clear her of cancer, 2 weeks before maybe we could begin to move on with our lives. It’s crazy that such a wonderful day like January 6th can contrast so heavily with the horror of January 7th.

I remember every detail of that Thursday morning. I woke up after a night of horrific dreams in sweat and not long after I started to hear a disturbance from Connor's bedroom. Connor usually woke up early, but as we’d had such a long walk the previous day, my parents had let him sleep in. They went in to check on him around 10 as he still hadn’t woken up. I will never be able to forget the way I felt that day, there are no words to describe it and there never will be. The gut-wrenching, mental and physical pain was unbearable, I just could not grasp anything at all.

My brother passed away during the night and nothing could have prepared us for what we saw that day, we’ll never be able to forget it, burnt into our memories forever. They couldn’t tell us what had happened immediately and we waited for weeks to find out that Connor had died of ‘natural causes’ otherwise known as SADS (Sudden Arrhythmic Death Syndrome) – essentially the same as cot death for babies and small children. In detail, he’d had Dilated Cardiomyopathy (DCM), a condition in which the heart becomes weakened and enlarged, and it cannot pump blood efficiently.

There had been no signs that we’d seen (not that Connor could tell us if he had symptoms, being autistic) other than the occasional shortness of breath, that we’d attributed to the long walks we often went on. Connor was 17 years old and he’d died in his sleep. Every day of our lives we'd spent looking out for him, 24 hours a day, 7 days a week, and now he’d gone. It seemed surreal and impossible.

I wrote Connor's story for a variety of reasons, to raise awareness of autism and SADS and to keep his memory alive being just a few. I wanted to outline the serious effect autism or any disability can have on the lives of all those involved, and that it’s not just a passing problem or something that should be made fun of. I worried every day of my life that my brother would suffer bullying because of the way he was.

In the memory of my beautiful angel of a brother, Archie's Uncle, and for my Grandad Roy (who we sadly lost to cancer) who we know is looking after you up there, we miss you both every single day.

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