What Autism feels like

Life on the spectrum is like a triple espresso. Like a fiery curry. Like a pizza with the lot.

It’s like watching a movie at the cinema from the front row, like showering in the dark, like driving a hundred kilometers an hour with the top down.

It’s like surfing when the sea is wild, like kayaking through rapids, like sun, rain, hail and lightning all in the same afternoon.

It’s getting up every day and venturing out into a world of vibrant chaos, where indescribable joy and immeasurable terror clash and fracture into a kaleidoscope of thought and feeling.

And I wouldn’t have my life any other way.

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Flipping the script

“Gifted.” That was the label I was given early in primary school, due to my ability to write a level well beyond my age at the time. Writing was, and still is, one of my foremost autistic special interests. When I wasn’t working on my current scrapbook-length piece, I was feverishly brainstorming my next one.

I was fortunate; this particular special interest was something that was viewed positively by society. And so, instead of being labelled as “obsession”, I was called gifted. I was no less hyper-focused on my writing than I was on space, or spiders, or birds, or any of my other interests. The only difference was a matter of perspective.

And therein lies the key to identifying autistic strengths; taking the deficits model, and flipping it upside down.

Instead of looking at a special interest as an obsession, try to see it as expertise.

If an individual is hyperactive, then chances are they are enthusiastic and energetic.

Is a child really stubborn and defiant? Or are they determined, possessed of a strong sense of right and wrong, and a need to understand the “why” of things?

Are they an easily distracted daydreamer? Or are they a curious and imaginative thinker?

Are they blunt and rude? Or are just honest?

Is their sensory processing disordered? Or are their senses just amazingly sensitive?

Depending on how you look at it, the same traits can be strengths, or deficits. But choosing to treat them as strengths can make all the difference in the world to the individual.

Having my strengths recognized from a young age was the first step on my journey to self-acceptance. I believe every autistic deserves that chance.

The Healing Power of Special Interests

When I was a kid and I had a hard day at school, I used to come home, shut myself in my room, turn on my computer, and write.

The ideas that had been bubbling away inside my head all day would come gushing out like river breaking free from a dam, and I’d type out thousands of words inside an hour. And after that, somehow, I felt so much better.

To this day, when I’m feeling sick with anxiety, I read reviews of Godzilla movies, or listen to podcasts about battleships, or watch video breakdowns of how video game graphics work. These are my special interests, and when I immerse myself in them, it gives me the energy I need to fight back against fear and stress.

This is something I feel isn’t talked about enough when it comes to autistic special interests; they are a powerful coping tool, an antidote to anxiety, a wellspring of resilience and motivation, and an antidepressant all rolled into one.

A few years ago, when I had cancer and was overwhelmed with worry, my Mum used to ask me about my special interests to help me feel better, and every night as I lay there struggling to fall asleep I’d go over video games and naval history in my head; it was one of the few things that gave me any relief.

This is also why a lot of autistics dive headfirst into Youtube or gaming or a book when they get home from school or work; after a stressful day in a society not built for us, this is how we heal.

So often our autistic special interests are written off just an obsession that serves no useful purpose, but in fact, they are not only a source of great joy for us, but an invaluable ally against the stress of an often hostile world.

My Brain is a Steam Engine

As a child, I was always fascinated with the way things worked, and one of my earliest special interests was steam engines. The notion that just heating water into steam could somehow move hundreds of tons was just so cool.

I used to imagine that the inside of my body was like a steam engine, with water tubes, pistons, and a furnace in my stomach. As it turns out, my child self was onto something, because it’s actually quite a fitting metaphor for the way my autistic brain works.

For me, it feels as though my thoughts are the steam that powers me, and my fuel is the input I get from the world; information, sight, sounds, smells, taste, touch.

With the right amount of fuel, my brain generates the energy I need to go about life.

If I don’t get enough fuel, then I can’t generate enough steam, and getting things done is hard.

On the other hand, if I get too much, then my furnace gets too hot, the steam pressure builds, and the boiler can blow.

Daily life is a balancing act of trying to keep the engine running at a sustainable level.

Sometimes I need to let off steam to keep my boiler under control.

But like a steam engine, when it’s running just right, my brain can do amazing things.

Routine is a refuge

You know that feeling you get when you’re in a tough job interview, and you’re trying to act all confident and cool when inside you’re about as calm as Wynona Ryder in the first season of Stranger Things? Imagine that’s every conversation you have.

Now imagine that every time you leave the house, every car horn is like Godzilla roaring into your ear through a megaphone, every smell has the intensity of a dead skunk that’s been lying in the sun for a week, and at any moment the sky could fall without warning.

Imagine that as you’re on your way home from grocery shopping one day the bomb squad pulls you aside, says “here, we need you to diffuse this bomb, good luck” and hands it to you with no preparation or training.

That’s what the world in all its unstructured chaos can feel like for some of us. Is it any wonder then that we cling to the comfort of structure and routine like it’s the last bottle of sunscreen at a nudist colony in the Sahara?

Routine is our safety net. It allows us to be prepared for what will happen to us next, so we can manage the stressors that could ruin our day. It offers us a sense of security, so we can feel that we’re okay even things are tough.

If I’m gonna face the monsoon of bullshit that daily life can be sometimes, at least let me bring a raincoat.

The Shallows

The worlds of the neurotypical and the neurodivergent are like the land and the sea.

Where they meet, in the shallows, there are those of us who live in both worlds.

Some of us are like seals; in our neurodivergent sea we exist effortlessly, at home in our element. We can come up onto the land, but we are awkward and out of our element there; it takes a lot of effort for us to do just about anything.

Others are like coastal birds; they can venture into the sea, but it’s not their home.

For the inhabitants of the sea, the land can seem inhospitable, a place of crushing gravity. For those who live on land, the sea can seem terrifying.

Yet the two worlds cannot help but intersect; every sea and every continent must have a shore.

A dolphin cannot survive being dragged up onto land. But an inhabitant of the land can wade out into the shallows, and meet the dolphin where they both can exist.

Holdover Childhood

Let us consider, for a moment, the world of a child.

In a lot of ways, it is a frightening place; there is usually little to no agency over what we will do that day, when we will do it, what stressors we will encounter, what will be asked of us. Think about it for a moment; as an adult how would we feel if we had to live our lives under such demands?

Because the thing is, for those of us who are autistic, this extends into our adult lives in a lot of ways.

Every day, we are required to navigate a world that is not designed for us. We are expected to work hard to meet the requirements of neurotypical social protocol. We have to contend with noises, smells, crowds, and other stimuli that can be painful and exhausting. Society demands that we operate in a way that is uncomfortable for us. In essence, it can often feel like that childhood experience of having to live on other people’s terms never really ends.

Compounding the problem is that autistic adults are very often infantilized by society. Please don’t do this. It can be frustrating and demeaning for autistic adults when people treat us as if we’re still children. Once again, put yourself in our shoes; how would you feel if somebody treated you this way?

Don’t be the reason someone autistic feels disempowered; treat us with the dignity you’d afford to any other adult.

How you can help

One of the most frequent questions I hear in the field of advocacy is when people ask how they can support their autistic child, friend, partner, colleague, family member, or acquaintance.

Now, I’m only one person, but from my perspective as someone autistic, here are some of the things that help me.

– Don’t pathologize our differences

There will be things that autistic people do differently, whether it is the way a child plays with toys, not making eye contact, stimming, etc. Please don’t try to correct these things or treat them as a problem. Respect that the way we do things works for us.

– Give us time

When talking to us, it can help us a lot if you give us time to process. If you ask us something, let us think about it without interruption. Rushing us can cause anxiety, and if a conversation moves too quickly it can be hard for us to participate. A little patience goes a long way.

– Give us space

Social contact can be hard work for us, and sometimes we need a little time to ourselves to recharge. This doesn’t mean we don’t love spending time with you. Our brains just need a break sometimes.

– Participate in our interests with us

Super important one for autistic kids and partners!

If we love gaming, maybe we’d like to play something with you. If we love reading, maybe we’d love to share and discuss books. When I was a kid, my parents would hide chicken bones around the backyard so I could pretend to discover dinosaur bones, and when I was obsessed with lanterns, they make me one out of a tin can and candle.

Our interests bring us enormous joy, and in many cases, we’d love to share that joy with you.

– Be mindful of sensory issues

Autistics can be sensitive to things like noise, smell, or touch, so please be aware of this. Try not to shout or get in our personal space.

– Clearly explain things

Like a lot of autistics, I don’t understand hints.

If you want something from me, you need to tell me, because if you try to subtly hint that you want something from me or that I’m accidentally being rude, I will almost certainly miss the implication. The finer points of neurotypical social protocol can be a frustrating foreign language to us, so it’s best to just be upfront.

– Give us warning

Many autistics derive great comfort from structure and predictability, and sudden change or uncertainly can cause us immense anxiety.

Giving us advance warning of events, obligations, and plans can be a big help.

– We’re people too

At the end of the day, autistics are human beings. We like to be treated with respect and dignity, and not with pity or as infants. It’s great to accommodate us, but always remember to treat us as a peer equal.

Of course, everybody is a unique individual with their own needs, so these are just some general recommendations to start with. Get to know the person, and accept them for who they are, and above all, be kind.

Withstanding Withdrawal

After 11 years of taking clonazepam, I have finally quit entirely.

In my last post I touched on some of the symptoms I experienced while tapering down my dosage. At the time, they were a hassle, but that was just the tip of the iceberg compared when I stopped altogether.

Holy moly as it been a bumpy ride. In the last few weeks since stopping, I’ve felt like insects were crawling on my skin, like my senses are reaching me from a million miles away, and like I’m going to throw up. I’ve experienced insomnia, tinnitus, tremors, and numbness. At one point I felt so awful that I went to see my doctor to check if this was normal or if something was wrong with me.

As I write this it’s day 11 off the meds, and I still feel like I’m on another planet. I have to remind myself that just weeks ago I felt fairly normal, as right now it feels like I’ll never feel normal again.

To give an idea of how severe and scary it can be, there are cases of people in benzo withdrawal being misdiagnosed as having multiple sclerosis.

And therein lies the biggest problem; not so much the physical symptoms themselves, but the way they feed in to my OCD. For much of the last month I’ve been constantly worried that what I’m feeling isn’t just withdrawal but something more sinister, and that anxiety has been the most difficult thing to cope with by far.

I am immensely grateful to my wonderful friends and family, and to my amazing girlfriend for being so supportive through this challenging time.

As tough as it is, some of my symptoms are definitely starting to lessen compared to the first few days off the meds, so I am hopeful that by the time of my next blog post, this particular challenge will be behind me.

Quitting Clonazepam, Starting CBD Oil

In 2011, I was in a very bad place. My OCD was severe and debilitating. I was having breakdowns on an almost daily basis, so overwhelmed with anxiety I could barely function.

I was prescribed clonazepam, which belongs to a class of medications called benzodiazepines. It’s powerful stuff, but desperate times call for drastic measures, and it was helpful in reducing the intensity of my panic attacks.

Last month, after more than a decade, I made the decision to stop taking it. Clonazepam is addictive so I knew the process of weaning off it would suck harder than a black hole, but after talking it over with my psychiatrist, I finally felt like I was in a stable enough condition to try.

At the same time, at the suggestion of a close friend, I had started looking into CBD oil. I’d heard many good things about its efficacy in treating anxiety, and that it had fewer side effects than the medication I’m on, which among other things make it very difficult for me to stay in my healthy weight range. (Which is a big deal to me as I have a family history of cardiovascular disease, with both my dad and his dad dying prematurely from it, and health concerns are the primary source of my anxiety)

With a medication like clonazepam, quitting cold turkey is a very bad idea, so instead, following the advice of my psychiatrist, I’m gradually reducing my dose over the span of 8 weeks.

I knew it wouldn’t be fun, but I underestimated just how rough it would be. My withdrawal symptoms run the gamut from shaky hands that make it difficult to type or use a mouse properly as I write this, blurry vision, headache, fatigue, sore muscles, and at first, a tsunami of anxiety.

I say at first, because roughly a week after I started tapering off my clonazepam, I started taking CBD oil.

I’ve been on a ton of different medications in my life. Some helped, others were about as useful as a concrete parachute. Of all the ones I have tried though, none have been as effective in reducing anxiety as CBD oil.

Almost immediately after I started taking it, the rising tide of anxiety began to recede. The unwelcome thoughts themselves were still there, but the visceral physical reaction they usually cause (hot and cold flushes, tight and painful chest, racing heart and brain, nausea) was virtually eliminated. It also doesn’t seem to have caused me any negative effects.

I should note that I am not doctor and have no medical qualifications, but in terms of how much it has helped me, I hold CBD oil in the highest regard. If you’re interested in it, I would definitely recommend going through the proper channels; it can interact with some medications so it’s best to get assessed by a professional.

I got my assessment and oil from an organization called Releaf, (please note, this article is not endorsed, approved, or associated with them, and purely my own opinion) but there are others out there as well and I was surprised at how smooth and painless the process of obtaining it was. If you too suffer from anxiety, I would say it is absolutely worth looking into.

One potential barrier is that it can be expensive, but on the plus side, one bottle lasts a long time, at least at the dosage I am on. Another potential complication is that, in Australia, you are not allowed to drive with any amount of THC in your system. Some CBD products contain THC and some do not, so it will depend on what you’re using and it’s definitely an important factor to consider.

Over the last few weeks, a lot of people have asked me about CBD, so I decided to write down and share my experience. It has been an absolute lifesaver in terms of helping me quit clonazepam; I honestly don’t know how I would’ve handled 8+ weeks of how I felt at first.

If you have any further questions about it that I can answer, please don’t hesitate to leave a comment and I will help as much as I can.

In a week’s time, I will take what will hopefully be my final clonazepam tablet. It hasn’t been easy withdrawing from it, but I look forward to a new chapter of my life in which I no longer need it.

Autism and Alcohol

“Alcoholic” is such a negative term. I prefer to think of myself as an Ethanol Enthusiast.

Yes, like millions of Australians and billions of people around the globe, I partake in and enjoy the effects of fermented plants.

When I started drinking at the age of 18, I quickly discovered something rather remarkable.

You see, as an autistic with OCD, my brain can be an awfully noisy place. Anxieties, sensory stimuli, manual processing of social code and the like can fill my head like a swarm of cicadas.

Once I’d had several drinks though, it was like the volume dial on all that was turned down. The near constant stressors that grated on my mind day in and day out felt muffled, muted, defanged. Suddenly, social interactions seemed to come more easily, loud noise and crowds didn’t bother me so much, and anxiety faded into the background.

Needless to say, I was a big fan of this newfound relief. Throughout my early twenties, I essentially self-medicated with alcohol as a way of managing my social anxiety.

You can probably see where this is heading. I drank too much, often to the point of getting sick, blacking out, and even ending up in some bad situations due to impaired judgement.

My situation was far from unusual; I now know many autistics who also turned to excess drinking as a way to cope. The stress that arises from the disconnect between our neurology and the society we have to live in can make us uniquely susceptible to seeking out the anaesthetizing effects of alcohol.

Eventually, I got myself back on track, and while I do still have a drink now and then, I now do so in moderation, (for the most part) with an awareness of the temptation to excess I am prone to.

As is so often the case in substance abuse, my binge drinking was a symptom of a deeper issue. I needed to learn safer ways of managing my social anxiety, such as planning and limiting my time in stressful situations and environments ahead of time, and getting a better feel for when I was approaching my limit so I could get out before hitting my breaking point.

Now, all of this is not at all to say that autistics shouldn’t drink. If you enjoy having a drink or three sometimes, groovy, more power to you. I like to sink a few cans myself sometimes after a long day.

I just think it’s important to be mindful of the risks of self-medication, and that our status as autistic can make us vulnerable to it.