The Spectrum of Awareness: Shining a Light on Severe Autism

Apr 6, 2019 | reThinking Autism blog

Witnessing a severely autistic person in full meltdown can be a truly frightening experience.

Or what not to celebrate this World Autism Awareness Month

With the celebratory tone of autism awareness month, it’s all too easy to overlook common aspects of the autistic experience that no reasonable person would salute. For those families who care for someone with severe autism, one of the most difficult things to witness is their loved ones engaging in self-injurious behaviour. Having had a severely autistic sibling 12 years my junior, I can attest to how devastating this facet of autistic life can be. I’ve previously blogged about my brother Jake, and this will be a further accounting of our time together.

Jake’s primary method of self-injury involved biting himself during frequent, uncontrollable meltdowns, usually on the soft tissue of his forearm or hand. With near constant hawk-eyed vigilance, it was possible to intervene in time to prevent Jake from harming himself. On occasion though, he would slip from our grasp, often wedging himself behind or under a piece of furniture. Once out of reach, he’d bite deep into his flesh, the result a bloody scene not out of place in any number of slasher flicks.

To achieve a meaningful level of autism awareness across our societies, one that benefits all autistic individuals, we need to tell the stories that are hard to hear — the ones that reflect the realities of life for those most severely affected by autism.

Equally disturbing was my brother’s propensity to bang his head repetitively against any solid object within range, the jarringly forceful impacts only adding to the urgency of the situation. Witnessing a severely autistic person in full meltdown can be a truly frightening experience.

The triggers for Jake’s explosive meltdowns were unpredictable and difficult to anticipate. He paid little mind to the laws of physics, responding with anger and frustration to environmental impediments that would require a son of Krypton to overcome. To deny him something he desperately wanted, usually for the sake of his well being, invariably resulted in the same emotional dysregulation.

Generally speaking, it was a combination of various sensory, environmental and pathological factors that fed this tsunami of raucous and brutally aggressive self-injurious behaviour.

It seems likely that seizure disorders are an integral part of the underlying pathology of autism. They are also indicated in the causation of extreme behaviours, including aggressive outbursts and persistent self-injury, that occur in the absence of other obvious causes.
My little brother’s complex presentation of autism included treatment-resistant epilepsy, a condition that is the leading cause of premature death amongst the autistic population. Tragically, Jake passed away aged six from complications related to a particularly violent series of seizures.

It’s now understood that subclinical epileptiform activity is present in a large majority of autistic individuals, even in the absence of clinical symptomatology. It seems likely that seizure disorders are an integral part of the underlying pathology of autism. They are also indicated in the causation of extreme behaviours, including aggressive outbursts and persistent self-injury, that occur in the absence of other obvious causes.

It strikes me that this knowledge would have been particularly relevant in understanding and managing my brother’s seemingly uncontrollable outbursts of rage.

Another feature of Jake’s autism was pica, a condition that comes with a proclivity for eating non-food items. One enduring memory I have is of returning to my bedroom and discovering a scene reminiscent of the inside of a giant snow globe. My little brother had escaped the watchful eye of our mother to seek mischief in the shape of a brightly patterned bean bag. After deftly finding the zip, he’d clearly taken great pleasure in emptying the contents of the bag over my bedroom floor. There he sat, amongst the innumerable little polystyrene balls, shoving handfuls into his mouth.

This is the group with the greatest need for recognition, one which should be at the forefront of any awareness campaign.
During this month of autism awareness, it is important to recognise that these are the harsh realities for many on the spectrum, unrepresentative of the glamourous autistic celebrities and trendy identity label some would have us celebrate as the only manifestation of autism.

This is the group with the greatest need for recognition, one which should be at the forefront of any awareness campaign.

My beloved brother and all the other beautiful autistic souls who we call our friends and family are very worthy of celebration. I make time every day to reflect on my happy memories of the laughter, chases and tickles that we shared, the many hours we spent watching his favourite cartoons and the cuddles that he sought out when he finally surrendered to his body’s need for rest.

However, to achieve a meaningful level of autism awareness across our societies, one that benefits all autistic individuals, we need to tell the stories that are hard to hear — the ones that reflect the realities of life for those most severely affected by autism. Listening to the parents, carers and siblings of severely autistic humans who can’t speak for themselves in this conversation, alongside autistic voices, is the only way we can achieve true awareness of what it is to be autistic, and what societal changes are needed to benefit the entirety of the spectrum.

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.

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