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I Am Autistic. I Am Exhausted.

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At 37 years old, I have lived and worked in London for 17 years.  I am female, reasonably educated, maintain my own home, car and job. 

I am autistic.

I am exhausted.

Like some other women on the spectrum, I was not diagnosed until I was in my 30s, and understanding and coming to terms with that knowledge has taken time. It has taken time to unravel the course of events through which my life has been woven and time to understand the challenges that have led to health and emotional crises.

Three things it is important to understand:

  1. Autism is not a mental health condition, it is a neurological and therefore physical disorder.
  2. Autism does not mean a lack of difficult challenges in some people, simply that they may be more masked.
  3. There is an 85 percent unemployment rate amongst working-age autistic adults in the U.K., according to the Big Business Boost.

Like much surrounding autism, there is a general misconception of how the spectrum works. When we look at a spectrum in any other context, we tend to depict it as circular; take the color and light spectrums as examples. However, when people describe the autism spectrum, they seem to have the image of a straight ruler, moving people up and down a scale dependent on “how autistic” the outside party deems the person they are interacting with to be. As an adult who is considered “high-functioning,” this often leads to unhelpful external input regarding the difficulties I experience on a daily basis. People often see a mental health disorder and not a condition that can have physical characteristics.

As one of the 15 percent of autistic adults who have maintained work throughout adulthood, the exhaustion of the daily sensory overload of working in one of the world’s most frenetic cosmopolitan hubs, navigating the personal interactions and the long working days have taken a dramatic toll that I am only now beginning to understand. 

Sensory overload I can only describe as akin to being trapped inside a Faraday Cage with electricity being shot at you that the cage is not protecting your brain from, with the neural pathways triggering and misfiring electrical responses that cause your mind to retreat as a physical trickle-down occurs to the rest of your body. The result of this is commonly described as meltdown, looking to an outsider like a temper tantrum, but actually the reaction to an explosion of internal pain caused by an electrical release from all of your nerve endings at once.

Thirty-seven years of dealing with this while navigating the world has led to monumental burnouts, where I haven’t been able to function for weeks, meltdowns of such epic proportion that they have led to accidental overdose and hospital stays just because I realize now I was trying to find any kind of relief. The loss of friends, the loss of jobs, occasionally what feels like the temporary loss of sanity.

The reason I write this is that it is important for people to understand that an independent, functioning life as an adult on the spectrum is possible. I work in offices in jobs that require negotiation skills and vast amounts of interaction, I create policy, I work with data, I occasionally people-find for authors. I use the subset of skills that autism has enabled in my brain to find the stories in patterns. What is vastly important is understanding self-care and how to manage any challenges so they don’t over-ride you. That is why advocacy and increased understanding of how to live are so important.

There is a story as old as the world that tells us that, as humans, we are here to connect; only connect. Sentient beings, it is built into our DNA to link with each other, build relationships, families, community. And when you look at the science of it, I suppose that makes sense. All of the evidence is out there, written into the building blocks of nature and of the universe itself. There’s a magnetism to the space we inhabit, to the world around us, that draws everything together. Whether it be Einstein’s Gravitational Waves or the Golden Ratio, the ecology of connection and the ways in which we fit together are scattered and hewn into every particle of every organism across the entirety of space and time. And so it happens that connection begets connection and in turn begets life. We are born of the connection between our parents, into these families and communities and in turn build our own relationships, families and communities, down through history. A constant thrum of connection and creation. While it often seems that autism is a disorder embodied by disconnection, what I now understand is there are ways for everyone to fit; it is just a case of shuffling the pieces and making the small adjustments until we do.

I would like to work towards a world where neurodiversity in the workplace is fully understood, and employers can make adjustments for this. I would like to live in a world where I don’t get home from work at the end of the day and have to sit in a darkened room for hours. I would like to live a life where I can go out in the evening during the week or on a Sunday evening and not be totally wiped out. 

But until that point, now that I understand, I just need to do whatever tiny things I can to improve understanding and hopefully eventually improve life for others on the spectrum.

Image via Thinkstock

Originally published: September 14, 2016
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