Another like me?

This blog isn’t an “autism parent” blog. I use this site as a place for my own catharsis, and for information- and experience-sharing. Nevertheless, I am a parent, and that part of who I am will, at times, feed into what I think and feel, and, thus, what I write about. I am also an autistic parent, and now my family has new knowledge.

Two days ago, my four-year-old daughter received – as I did, two months ago – a formal diagnosis of Autism Spectrum Disorder (deemed synonymous with Asperger Syndrome). Like me, she’s #actuallyautistic.

Unlike many parents of autistic children, I do not feel a hint of “grief” at this news. We had a feeling; we did research (in my case that very intensive, exhaustive, and in-depth research that comes of being someone of my neurotype); she had an assessment; and our feeling was confirmed. This is who she is. She is both wonderful and annoying, just like all four-year-olds. And being autistic is part of her identity, her personhood; it always has been. We’ve not been robbed of anything.

Do I feel an added pressure? I share a similar neurological profile to my girl. Am I then to be her primary mentor? Well, I am her mother.

We are alike in so many ways. So often I see myself in her. And – as it would be for any parent whose child is, to some degree, like them – this is a double-edged sword.

It’s all too easy for us to live vicariously through our children, or try to turn them into “improved” copies of ourselves – foisting our own interests upon them at the first vague hint of curiosity; drilling them to do better at something at which we feel we missed the mark.

She has received her diagnosis, thirty-two years younger than I received mine. Her life, and her knowledge and understanding of herself, will inevitably be different.

But then, of course her life will be different.

Because she’s not me.

Like all children, she is her own unique and beautiful self.

I will have insights into some of the ways she thinks and feels that some in our family do not share. I’ll be able to put myself in her shoes in a way that others in our family cannot do. I might be able to explain things to her in a way she can understand, better than those around us. And I can provide insights to others that might help them to understand both of us a little better.

Because autism is intrinsic to who we both are.

But…

We also have the many layers of identity, circumstance, experience, and personality. No two people are the same, and she – like her brother – will also learn so much from others around her.

It’s wrong of me to think I would ever have all the answers to how to be a parent, just because I share the same neurotype as my child. Just as it’s wrong of any parent to refuse to try to understand a child who is fundamentally different from them.  Whoever we are as parents, whatever our neurotypes or those of our children, we must allow them to learn from us, and we must also learn from them.

I’m just glad she has that chance of self-knowledge, and the opportunity of support and understanding, at an age when these things can, potentially, make a positive difference.

So that she can truly be her own person, and – or so, at least, I hope – not spend a lifetime trying to be someone else.

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Sharing: To those with autism who think autism is ONLY a way of thinking differently-you DO NOT speak for me

Such important words. As much as autistic people are experts on autism (and we are!), every autistic person – myself included – should remember that each one of us can only ever speak for ourselves as individuals. Every person’s experience is different…and equally valid.

A line has been crossed.

As I wrote in another post a while back, sometimes it hits me.  And this morning it really, really hit me.

And I did something I’ve never done before.

Since my official diagnosis, exactly two months ago today, I’ve been – as usual – in numerous situations at work where I’ve been required to ‘network’. Communicate fluidly, fluently, and with facility. Be my best interacting self.

Two weeks ago, I was away at a conference for three days. I networked furiously, contributed to discussions, tweeted insightful nuggets of wisdom against the official conference hashtag from my professional Twitter account, drank wine, danced my ass off at the gala dinner, and successfully co-presented a workshop session (I have no qualms about teaching, presentations, public speaking or the like. I very rarely even get nervous. I’m usually well-prepared, and I’m usually the expert).  It wasn’t until the train journey home that I mentioned to anyone that I was autistic.

(That ushered in a fascinating in-depth exchange, lasting the entire journey, with the fellow delegate I was travelling with. But that’s an aside.)

My department colleagues all know. They’re supportive. They were making ‘reasonable adjustments’ for my needs before I’d even got a diagnosis; before my ‘problem’ even had a name. When I did announce my label, it was all cool.

But today,  I entered new territory.

A three-hour-long planning workshop. People from four different departments. A small room for the size of the group. Hot, stifling, crowded, and cramped. A packed schedule of group discussions, with activities planned to keep us busy even throughout the coffee break. Fluorescent lights. Construction noise outside. Some machine or other outside that occasionally issued an irritating high pitched “beep!”. Occasional moments where I was put in the spot to answer questions about services delivered by colleagues in my team about which I had limited knowledge.

And all of this when I was tired from being a parent of small children, from limited sleep, and from the fact that this time of year is kinda busy for me at work. My brain already works overtime, every day. And right now there’s overtime on top of the overtime.

For most of the morning, I managed. But gradually, my anxiety levels built up. I knew I had only a short window to do another piece of work before I’d be in another meeting all afternoon. I was frantically trying to interact with these colleagues whom I hardly knew, worried about how I might be coming across, whether my mannerisms were odd, whether I was being too controlling, or too awkward.

And all the time, getting hotter and hotter, more and more uncomfortable, more and more overwhelmed. I could feel the tears starting to build up; not quite yet breaking through.

And half an hour before the end of the workshop, I said it. To the people on my table. Colleagues, but ones whom I hardly knew.

“I’m really sorry. I’m autistic, and I’m starting to get overloaded. I think I’m going to have to leave now.”

There. The first time I’d been up front to people beyond my immediate team, and in the immediate context of a particular work situation.

I wish I hadn’t felt the need to utter the word “sorry”. I still couldn’t help being embarrassed. I hope that’s something that I eventually learn to get over. But I felt I had to be honest. Why make up a lie – or a euphemistic, veiled reason for leaving? Better this than bursting into tears.

I’m not sure what they’ll have made of it. One of the people came out with me, sat with me for a while, and helped calm me down (she had relatives who are looking into whether they might be “on the spectrum”).

The others on my table might have found it odd. Awkward. Uncomfortable. But maybe, later on, they might think back and wonder. Possibly do some finding out. Or maybe not. Who knows?

But I have been honest.

A line has been crossed.

Sharing: Got an #ActuallyAutistic story to tell? Something to share?

Writing is so helpful for me – both in allowing me to unload my thoughts, and in, hopefully, providing a platform for me to share my experiences and (maybe) educate others. If you’re autistic, and you have things to say but don’t run a blog, Under Your Radar is providing a valuable platform here.

Just Under Your Radar

colored pencils with different colored lines drawn on a white board We all have a story to tell

If you’ve got something to share about your autistic life, but you don’t have a blog – and don’t want to be bothered with it – send to me in the comments below as a guest post.

I’m not doing much writing this month (it’s my Silent September in honor of my non-verbal self).

So, if you’d like to fill in the blanks here, please comment below, and I’ll edit your piece & post it here (provided it fits, and it’s written by an ActuallyAutistic individual – self-diagnosed or self-identifying is fine with me — just no overt hate, bias, etc allowed – just … no).

Cheers

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Mesmerising nature

I am drawn to the colour green.

It’s an additional nutrient my body needs to stay alive.

I grew up in a village, surrounded by trees, fields, winding country paths, and gently rolling hills. My childhood was in many ways far from idyllic – as an undiagnosed autistic girl it was hardly ever going to be so. But I have fond memories of my surroundings, and of my being in them, living in them. Paddling in streams. Stomping across fields. Scrambling up piles of rocks. Gathering blackberries. Riding my bike along narrow, hedge-lined country roads.

This affinity with nature influenced my university choices. Being unable to drive means that the proximity of amenities and (relative) convenience of public transport has always kept me city-dwelling since l left my parents’ home, but I’m fortunate that my particular city is hilly, tree-lined, full of green spaces, and very close to dramatic, wild countryside. It’s 18 years since I first moved here to study – once I’m comfortable somewhere, I see no reason to leave. Perhaps that makes me unadventurous; more likely, it’s simply me and my autism, and my need to avoid too much adjustment, too much for which I must undergo a torturous, protracted process of planning and preparation.

Whatever. This city works just fine for me. I might need earplugs at times when I’m walking its streets, but otherwise, it has what I need.

When I spend any length of time somewhere flat, grey, or lacking in trees, I feel depleted. Malnourished. Sickening for something.

I keep a house plant on my desk at work, and a large, photographic poster depicting a forest path on the wall next to my computer monitor. Just so that I always have available the anchor of something green. Something natural.

Whenever I’m out in a built-up urban environment, I’m scanning the view in front of me as I move through the scene, searching for a tree. Something to grasp hold of visually; something that – in the natural, flowing movement of its branches in the wind, the colour of its leaves, and the texture of its bark – grounds me, earths me, helps me find my centre. Whilst some details jarr and overwhelm, others – those found in nature, and in trees, especially – are therapeutic.

On my walks to and from work, I take time to note what’s going on. New growth in spring. Young leaves, bright and soft. Older, darker, tannin-filled mature leaves. The lifecycle of flowers. Developing fruit. Leaves changing colour. Decay. The sculptural artistry in twigs and bare branches. The birds, invertebrates, and mammals that populate this world. So much to notice. Every season bringing a different sensory boost.

Were I the most accomplished, skilled visual artist on the planet, there would still not be a paintbrush, pen tip or sharpened pencil fine enough to capture all the minute detail of everything that I see in front of me. I cannot help but notice every blade of grass; every clover leaf; every individual, tiny frond in a carpet of moss; every wind-ruffling ripple on a lake.

It’s not that my eyesight is brilliant. I’m a little shortsighted, with a fairly pronounced astigmatism in each eye. I would not be able to manage day to day without glasses or contacts. But they do the job of making things clear enough. And then my brain seems to take in so much of what’s there – the image generated in my mind is ultra-high-resolution. Part of me wonders whether my visual processing peculiarities exacerbate my (on the face of it, pretty mild) eyesight problems. Because I take in so much, and lack the ability to filter, seeing without additional synthetic lenses is, maybe, like looking at a very low-resolution image of a vast, rich landscape. So much in view, captured with such a frustrating lack of clarity.

On bad days, when I’m tired, anxious, or stressed, the details can be migraine-inducing – just like any other form of information overload. The strobing of sunlight – dappled through trees, or zoetrope-flashing through park railings – can be dizzying and nauseating. I have to look away. I’ve previously alluded to the fact, also, that – for me – flowers appear to glow. And it’s true. Certain colours, contrasted against a green or dark background, shine out like fairy lights or lanterns. I know that not everyone experiences colours in this way. On a day when I am relaxed, well rested, alert and well, I revel in this light show. The visuals accompany the songs in my head. I have no need for psychedelic drugs when the picture in front of me gives me such a ‘high’. But when I’m exhausted, upset, or overwhelmed, sunglasses are the only option to dampen down a headache. The brightness is too piercing.

And yet, at times when a silent, darkened room isn’t an option, green open spaces are still far preferable to human-made environments. There’s always something fascinating to draw me in, soothe me, and give me cause to pause and meditate.

If I’m in danger of being overpowered by my surroundings, I’ll latch on to one thing and immerse myself fully and completely until I am calm again, relaxed but alert. Raindrops on the web of a garden spider. Bees crowding a sedum plant. The geometric beauty of flowers and seed-heads. The concertina un-fanning of new beech leaves. The fractal-like, seemingly endless detail of the fronds of a fern.

And favourite of all, trees blowing in the wind.

All-consumingly mesmerising. Detail. Captivating flowing movement. A timelessness caught in their gnarled, twisted, reaching shape. The soft swisssshhhhhh I hear. Some autistic people say that watching trees in the wind is their favourite visual stim. And I agree. Intertwined with the auditory swisssshhhhhh, and the feel of the breeze on my skin, this visual stim renews me more than almost all else.

I’ll watch from a distance, or I’ll stand directly underneath and look up, awestruck, and dumbstruck.

I have lived in this city for 18 years. And there’s always something new to see, outdoors. Amidst the green.

Nature’s always doing something interesting.