Brothers on the Spectrum: My experience of sibling love, loss & severe autism

Mar 18, 2019 | reThinking Autism blog

As Jake’s (very) big brother, I felt an instinctive protectiveness towards him. This mini human came into my life when I’d reached the grand old age of 12. Moving ever closer to adulthood myself, I recognised his troubled progression from babyhood to childhood. It’s a reality I knew all too well, one where our vulnerability increases as we miss those critical developmental milestones and once-familiar routines are replaced with ever more demanding social expectations, in a world that refuses to stand still.

Jake came with a heavy burden of responsibility. It was a rare occasion that we would be left alone together. But this wasn’t a reflection on my competence or trustworthiness. Instead, it was a simple truth that Jake required a level of care which one person couldn’t safely provide. Even our mother was reluctant to take him out alone, and planning the simplest of outings needed military precision. A car trip required me to act as a chaperone, dutifully engaging Jake on the back seat to ensure he didn’t indulge in his propensity for trailing bodily limbs out of the car window. My little brother had also been known to launch into the front of the car, if he felt we were headed in the wrong direction, precariously grabbing at the steering wheel in an attempt to change our course.

Once released from the confines of the car, a whole new world of unpredictable dangers presented. Jake needed both his hands holding, for slipping from our grip meant he would likely tear helter-skelter into busy traffic or throw himself headfirst into the jaws of another potentially life-threatening situation. Fortunately, Jake’s love of routine and simple sensory games allowed some measure of reliable control. He loved to be swung, stretched and jiggled as he walked between us, gripping onto our hands for dear life as he enjoyed the visual stimulation and proprioceptive input that came from contorting his body, using us as his resistance bands.

One particularly unpleasant memory from that period of my life was when we took Jake to spend his first night in respite care. The respite process had not been explained to me, at least not in a way I could comprehend. We ventured out in the car one evening, at what was a most unusual hour to be leaving the house. Jake was oddly quiet during the journey, his head bouncing off my shoulder in a sleepy stupor with each bump in the road. Eventually, we arrived at a detached residential property where we were welcomed in by a middle-aged woman who ushered Jake and me into a playroom of sorts. A Tom & Jerry cartoon was playing on the TV, to which Jake immediately became transfixed.

Years later, I came to understand the events of that night. Our mother had become increasingly concerned with the effect caring for Jake was having on my well-being. I had barely attended school in months, and it was impossible to maintain a regular sleep pattern with Jake present.

After a few minutes of hushed conversation, our mother came in and indicated we were leaving. I moved towards Jake to prepare him for departure, but our mother took hold of my arm and quietly informed me that Jake would be staying here. This unexpected pronouncement left me panic-stricken. As I pulled away from my mother’s grip, an increasingly strained back and forth exchange ensued that quickly caught my little brother’s attention. With my confusion turning to angry obstinance, the woman who had greeted us at the door entered the room and moved to take Jake’s hand, in an attempt to lead him towards the door.

That was all she wrote as far as Jake was concerned. He launched the toy he had in his hand at the stunned woman and took to stomping his feet and kicking everything within range. His autistic rage was very quickly in full force, as he alternated between screaming and biting himself. Our mother apologised to the taken aback woman and grabbed Jake by both arms, making a break for the door. I followed in subdued, guilty silence, Jake’s screams echoing in my ears.

Years later, I came to understand the events of that night. Our mother had become increasingly concerned with the effect caring for Jake was having on my well-being. I had barely attended school in months, and it was impossible to maintain a regular sleep pattern with Jake present. His bed never had to be made because he refused to sleep in it. My little brother took what you might call cat naps. He’d find a comfy position, usually on one of our laps, and snooze for an hour or two while we stroked his head.

My little brother never spent a night away from home in his short life, and for that I am grateful. I would hate to have lost any of the precious time that we had together…I never once begrudged spending those nights with Jake.

What had been intended as a short break from the demands of living with Jake had been meticulously planned. Unfortunately, my resistance to losing Jake for a night or two had not been anticipated. My little brother never spent a night away from home in his short life, and for that I am grateful. I would hate to have lost any of the precious time that we had together.

Our mother had made efforts to secure the house so Jake could be left alone downstairs during the night, but it turned out that this was unacceptable to him. One of us needed to be present, ready and willing to make hot chocolate in his favourite mug and prepare scooby-snacks consisting of toast soldiers with Marmite. Jake remained bright-eyed and bushy-tailed into the early hours of the morning, watching his favourite cartoons and expressing his autistic joy with a hand raised in front of his eyes, peering through splayed fingers as he spun around in circles, vocalising his delight with ‘eeeeeh’.

I never once begrudged spending those nights with Jake. At the time, my TV obsession was Dr. Who and the Daleks (the 1965 film and its 1966 sequel). At some point during the night, Jake would slide a well worn Dr Who tape into the VHS player, and we’d play our Dalek game. It was something we’d invented, involving lots of chasing with vocalisations of ‘exterminate’ from me and squeals of delight from Jake. Once in my grasp, I’d pretend to ‘electrocute’ him by making buzzing noises and delivering some gentle shaking.

By his second year of life, my little brother dominated our lives with his iron will and violent displays of resistance to any change in his routine or environment. Jake had almost no spoken language by age four, other than ‘NO’, which was always delivered with unquestionable authority.

You might assume that our mother had a somewhat laissez-faire attitude to parenting, but this couldn’t be further from the truth. Growing up, my mother was the family matriarch, much as my grandmother had been before her. She exuded authority, and I loved and feared her in equal measure. She established a sense of order and routine in our household that greatly benefited this autistic puppy. Once Jake arrived though, things began to change.

By his second year of life, my little brother dominated our lives with his iron will and violent displays of resistance to any change in his routine or environment. Jake had almost no spoken language by age four, other than ‘NO’, which was always delivered with unquestionable authority. He also managed ‘Plu’ meaning please, a word reserved for when he was being denied something. Myself and our mother had each been assigned a garbled utterance which was used to get our attention if he needed one of us for something. Our mother quickly adapted to Jake’s needs. Her parenting style was transformed beyond recognition, antithetical to what I had experienced in my early years.

On the rare occasion that one of Jake’s good days coincided with a quiet spell in our bustling suburban enclave, we would be allowed out unaccompanied onto the small grassy playpark that sat opposite our house. It’s a space that forms the backdrop to my most treasured memories. Our mother would watch hawk-eyed from the front window, ready to rush out at the first sign of trouble.

 

My memories of Jake playback on a snowy loop, a well-worn tape of sweet memories, always ending with the same tragic scene. But he lives on in my mind, inspiring me to move forward in my life while anchoring me to a brief time of companionship, freedom and happiness.

The biggest threat to our playtime freedom came not from other humans, which Jake invariably ignored, but the presence of canines. In his fearless thrill-seeking, my little brother had developed a habit of running up to dogs, hitting them squarely on the head with a clenched fist, then running away, manically squealing in anticipation of a chase. We’re not talking about Chihuahuas here either, but rather fearsome-looking Alsatians and other equally intimidating breeds. It’s a game, I suspect, that developed from his beloved Tom & Jerry cartoons.

Driven by a desire to protect us from the retribution of angry canines, and the wrath of their equally perturbed human masters, I’d turned the thrill of the chase into a new game, one where I’d crouch down and simulate the appropriate growls and barks to signal my intent. Jake would give me a whack on the head, and I would dutifully chase him until he reached a point of exhaustion. I always caught him in the end, attacking him with tickles and raspberries to the tune of his whoops of joyous laughter.

My memories of Jake playback on a snowy loop, a well-worn tape of sweet memories, always ending with the same tragic scene. But he lives on in my mind, inspiring me to move forward in my life while anchoring me to a brief time of companionship, freedom and happiness. His short life was filled to the brim with autistic joy, enough for the both of us. Sharing his autistic nature, I perhaps had a unique appreciation of it and consequently felt its absence most keenly.

There is very little of him left in the physical world. Just some photos and digitised home video footage, along with a small collection of his most loved toys. I honour his memory by advocating for the rights of those like my little brother. I hope that one day all severely autistic humans will have access to safe and effective treatments for the chronic health conditions often associated with severe autism, to improve their overall quality of life and save them from the early mortality rate that plagues the autistic population.

About the author
Tom is a 38-year-old autistic male. Diagnosed with a speech and language disorder/learning disability as a child, he spent most of his school years in special education before being re-diagnosed with Autistic Spectrum Disorder. Thomas spent five years of his adult life as a psychiatric inpatient and currently resides in supported accommodation in the South West of England.

DISCLAIMER The purpose of this site is to provide information. No information on this website should be construed as medical advice. Neither article authors, associated charities, nor individual contributors take any responsibility or liability for any decision taken by site visitors as a result of the information contained herein or the external links provided. If you need medical advice, please seek it from a suitably qualified practitioner.

Privacy Policy  |  Terms and Conditions
© 2019 Thinking Autism | All rights reserved | Registered Charity: No. 1113628, Limited Company Registered in England: No. 5594787

Share this page

Share this content with your friends or colleagues