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.
A friend you sends a brief, neutral text message. Immediately, your brain tells you that they’re annoyed at you, because you’re such an annoying person and nobody likes you. A colleague or partner says they need to talk to you when you have time. Anxiety overwhelms you, and you instantly assume the worst. Somebody gives you constructive criticism on a piece of work you’ve done; you feel an almost physical pain, like you’ve been punched in the gut.
If any of this sounds familiar, you may experience Rejection Sensitive Dysphoria, one of the less talked about aspects of being neurodivergent, yet one of the hardest to live with.
This is essentially where you feel intense emotional pain at the thought that others disapprove of you, that you have failed at something, or that you’ve been rejected. While nobody likes these things, people who experience RSD have an extremely strong reaction to such feelings, to the point where it can feel unbearable. This is especially common in people who are autistic or ADHD.
Those of us who struggle with RSD often try desperately to please others, to the point of sidelining our own needs and wellbeing, in order to avoid that sting of rejection. We also tend to have poor self-esteem, and we tend to “mask” who we are around others, out of fear that our real self won’t be accepted.
RSD isn’t widely known; as someone who has suffered from it my entire life, I didn’t even learn what it was until my 30s. We have a long way to go in terms of raising awareness.
It’s important to know though that if you’re one of those who feels this way, you are not alone, you’re not crazy, or weak, and it’s not your fault. On the contrary, the fact that you deal with something so difficult on a daily basis speaks to your strength.
Kind words, reassuance, and patience can all help those of us with RSD, but what we need more than anything is understanding.
Remember that picture book, Who Sank the Boat, by Pamela Allen?
For those who don’t, it’s the story of how a bunch of animals all get into a boat one by one, until finally a tiny little mouse jumps in, and the boat sinks.
So who sank the boat? Well, they all did. It wasn’t just the mouse, it was the combined weight of them all, even though any one of them alone would have been fine.
This is often how it can be for those of us who are autistic and suffer from meltdowns. Sometimes, we may seem to explode over one little thing, even if it’s something we can usually handle just fine. The truth is, it wasn’t really that one little thing that made us snap, it was the combined weight of all the things we were already coping with.
Back when I was a kid for instance, just being at school surrounded by other people, constant noise, and other stressful stimuli felt like I was holding my breath for 6 hours a day. Masking my autistic tendencies used up all my energy, and when our coping capacity is exhausted, anything, no matter how small, can send us over the edge into a meltdown, just like the little mouse pushed the boat passed its carrying capacity.
The trick is to stop things building up to that point in the first place, to recognize when someone is nearing their limit, (a common sign is we can seem to go very quiet and “blank”, cos we are focusing all our energy on just holding on) and to find ways to ease the load, whether through breaks, positive sensory stimulation, or whatever coping techniques and accommodations work best for the individual in question.
If someone had noticed that the boat was nearing its limit before the mouse jumped in, maybe it wouldn’t have sunk.
I know I usually post a new blog at the start of the month, so if you wondered why I hadn’t posted this month, the answer is that I have had something of a mental health meltdown.
Anxiety and depression have gotten on top of me to the point where just getting out of bed or going outside are a big challenge, and so I just didn’t have it in me to do my usual monthly piece; for now, this will have to do.
The good news is that this isn’t the first time my mental health has crashed, and I managed to recover from previous episodes, so I am optimistic that I’ll be back to my usual self eventually, but in the short term, I must ask for your patience and understanding.
If you’re someone who reads my blog regularly, thank you so much, and I’ll get back to monthly updates as soon as I am able.
For many of us autistics, the world can be a scary place, where uncertainty and unpredictability cause constant anxiety.
To protect ourselves, we try to structure our lives as much as we can; we need to know what will happen and when it will happen so that we can feel safe.
It’s very frustrating then, when we ask simple questions such as “when will x happen” or “how long will this take” we are often met with anger, and scolded as impatient. It’s not that we are demanding that everything happen right now, rather we just need to know what to expect so that we can feel secure.
If I know that something will only take a few minutes, then I know I can go into “waiting mode” and brace myself, while if it will take while longer, then I know to adjust my expectations accordingly and do something to occupy my time.
What we need in these situations is assurance, not to be told off and made to feel worse. Please be gentle with us; we are trying our best.
If it feels like the world today is nothing but a constant onslaught of bad news and hate, consider this.
Social media algorithms are designed to maximise engagement, since that is what makes them money from advertisers, and few things generate views and interactions like purposefully divisive and extreme content. As such, sites from Facebook to Youtube to X have a financial incentive to bombard you with negative, hateful material.
While there is sadly a great deal of hate in the world; the good news is this; it’s not nearly as bad as your social media feed makes it out to be. What you see online is a curated stream of interaction bait designed to make you angry so you’ll comment/like/share.
One of the most valuable things we can do about this is simple; take the time to log off sometimes, and remind yourself that there is still a real world out there, full of people who are not hateful trolls or extremists.
Try talking to someone in person. Strike up a conversation. Now more than ever, as we are increasingly segregated into online bubbles of ideological isolation, it is crucial that we rediscover a sense of community beyond our screens, that we reconnect with our fellow human beings without a wall of warped glass between us.
The night seems dark when you shut yourself inside; but if you step outside, you’ll see the stars were there all along.
We don’t grow out of autism. Autistic children become autistic adults. Over time, we may become conditioned by society to suppress our autistic impulses, but that’s akin to how left-handed people were once forced to use their right through corporal punishment; what we are doesn’t change, we’re just forced to pretend otherwise.
If we are given the chance though, and accepted for who we are, something wonderful can happen; we can grow into our autism. By letting go of shame and stigma, we can rediscover how to be our true and unapologetic selves; to embrace the parts of ourselves we once concealed.
As a teenager, I was embarrassed by my obscure interests or my need to stim; now as an adult, I have learned to take joy in them.
And the key to all this was simple yet revolutionary idea; to rethink autism from viewing it as a disease, to simply a different way of being that’s just as valid.
Now, this is not to say that there aren’t challenges. But if we define autism purely in terms of those challenges, we not only miss out on its many positives, but we do autistic people a grave disservice by treating them as problems rather than people.
Self-acceptance is a life-changing thing, and autistic people are just as deserving of this as anybody else. An autistic child will not become a neurotypical adult. But given the chance, they can become a happy adult who is at peace with themselves and their own unique mind.
Before I get stuck into this one, I want to preface this by saying that we should absolutely support and accommodate autistic people; humans are after all a communal species, it is in our very nature to help one another. A single human cannot build a skyscraper or fly to the moon, but together we can.
One pitfall we need to be mindful of, however, is the assumption that because we are autistic we are incapable and can’t function independently. This risks become a self-fulfilling prophecy if we’re never allowed the opportunity to try.
Even in adulthood, autistics are often infantilized. Sometimes this comes from a place of kindness, intended to help us. While assistance can be beneficial sometimes, it is also important to make sure it doesn’t go too far and limit our autonomy; it’s difficult to learn to do something for yourself if it is always done for you, for instance.
On the one hand, throwing us off the deep end is rarely helpful. On the other, taking things one step at a time and giving us that gentle push can really pay off in the long run.
Now, I’m not saying we should take away the handrails altogether. Speaking for myself though, I don’t think I would have reached the level of independence I have today if my parents had not allowed me room to push myself, and indeed sometimes to fail.
Of course, the reality is that some of us will need lifelong assistance, and that’s okay too. It’s also important to note when we hit a rough patch or experience burnout, even those of us who can be pretty independent most of the time may need extra support. The key here is that one size does not fit all, and that each individual should be supported to reach their potential, whatever that may be.
When a person is first learning to walk as a child, we hold their hands to help them; there comes a time however when we need to let them stand on their own two feet. We remain beside them, ready to step in if they need us, but sometimes one of the most helpful things we can provide is space to grow.
Something I hear a lot is that we shouldn’t “label” autistic kids as autistic.
Now, coming from say parents who worry about their children, concerns are understandable; naturally we want the best for them and don’t like the idea of them being reduced to one characteristic.
Here’s the thing though; I was diagnosed at 19 years old, so I grew up without the label of “autistic”. Instead I got other labels; naughty, lazy, disruptive, annoying, rude, etc.
Not having a label didn’t make me magically fit in; I was still autistic, but because nobody knew that, my autism was misunderstood as just “bad behaviour.” I was punished for my autistic tendencies, and because I knew from a young age that I was different but didn’t know why, I thought I was just crazy and useless.
I wish I had been “labelled” sooner; maybe then I could have gotten the support I needed, and learned to accept myself.
Don’t fear the label of autistic; we are better off with one than without one. If you worry that we’ll be treated worse because of it, then the solution is to help promote awareness and acceptance of autism.
It’s the stigma, not the label that’s the problem.
Autism has only been a known condition for a matter of decades; in historical terms, a blink of an eye. This does not mean, however, that autism hasn’t been around for much, much longer.
Take the case of Henry Cavendish. He was an English physicist and chemist born in 1731, and one of the most brilliant scientists of his day. Among his achievements were the discovery of hydrogen, research on electricity that was cutting edge at the time, and an experiment where he calculated the density of the Earth using 18th century technology, and got within 1% of what we now know the answer to be.
Clearly he was a remarkably intelligent and talented individual. He was also extremely shy and solitary, to the point where he could only speak to those who were known to him and male, and only one at a time. He even communicated with his female housekeeper via notes.
When he attended scientific meetings, guests were advised by those who knew him not to address him directly, which would cause him to flee, but to wander close to him and “speak as if into vacancy. If their remarks were scientifically worthy, they might receive a mumbled reply.”
On one occasion, an admirer of his work went to his house, and when Cavendish answered the door, the man proceeded to praise him lavishly. For a few moments, Cavendish was said to receive these compliments as if they were physical blows, then he abruptly fled down the path and out the front gate, leaving his house wide open; it was hours before he could be persuaded to return home.
He was also uncomfortable with eye contact, very literal in his thinking, and single minded in his focus on his scientific endeavours. One man from the Royal Society who had visited Cavendish’s house said the exact same meal was served every night without fail; a leg of mutton.
Now, it is obviously impossible to diagnose a man who lived more than two hundred years ago, but I think a lot of us will find these descriptions quite familiar!
While we in the 21st century are still working towards autism acceptance, autistic people have been living among us and contributing to humanity for centuries, millennia even.
A metaphor often used within the community is Pluto; it may not have been discovered until the 1930s, but that doesn’t mean it wasn’t there all along.
The other day, I was with my girlfriend and our dog Poochy on a nearby mountain trail, and he jumped on me. The trail was muddy, and as he pressed his front paws on my pants and jumper, he left dirt, leaves, and debris stuck to me.
Once upon a time, this would have given me a panic attack. As a teenager, there was a time when I couldn’t leave the house without breaking down, when simply seeing a piece of rubbish would reduce me to a trembling mess.
But the other day, I gently pushed Poochy off me, brushed off the dirt, and got on with my day.
When you’re fighting an acute mental illness, every day can feel like a struggle, and sometimes it feels like you’ll never get better. I was diagnosed with OCD 18 years ago, and back then I couldn’t imagine ever overcoming the death grip it had on my life.
But day after day, year after year, one hard-won inch at a time, slowly pushed back, until today, I’ve come further than I ever imagined possible. OCD will always be a part of my life, but where once I couldn’t even go into a public toilet, I’ve now learned to pick up my dog’s poop; how’s that for progress!
Given enough time, a mere acorn can grow into a towering oak; progress is not measured in speed, but in persistence.
Max's shop of horrors 
