Acting Autistic

I have been told by some people associated with the TV show ‘The A Word’ that the following thoughts are ‘just’ my opinion. That is true. Nevertheless, my opinion is no less valid than any other opinion and I believe it is worth writing about. 

I have enjoyed watching the show ‘The A Word’. It is a very accurate representation of how some neurotypical people react when their child is diagnosed as autistic. The acting in it has been incredible. Very convincing.

 Except… except for the neurotypical boy who plays the autistic character ‘Joe’. On the whole, he does a good enough job. But certain scenes were less than convincing. I am referring to the scenes where he kind of depicts a meltdown. When he throws himself to the floor at his birthday party. When he sweeps his cereal off the table. When he throws a tray in the Gastropub. These are just a few examples, there are more but it would be tedious to list them all. I feel you cannot accurately depict a meltdown unless you’ve actually experienced one. (I’m not suggesting actually provoking and filming an autistic having a meltdown. That’s unethical. But I feel an autistic can inform their acting by their experience. )
This is not the fault of the actor’s age. It’s an impossible task for a neurotypical 6 year old actor. It would be an impossible task for a neurotypical 60 year old actor. It’s not a question of age or experience, but of neurology. 

And so, I contend that an autistic actor should have been used, to be truly authentic. They used an autistic teenager, and that’s to be commended, but it was a very brief role. The character of Ralph was played by an actor who has Down Syndrome. It would have been obviously offensive not to. But, until the last episode, we only caught a glimpse of him. A good start towards being inclusive but not enough. So, why could the character the show is supposedly based around not have been played by an autistic actor?

The author claims, in an interview, that it would have been ‘unethical’ to do so. Unusual, and I believe inaccurate, word to use. Yes, it would have been more difficult. Yes, it would have been more expensive, as patience and accommodations would have been required. But I’m not sure where ethics would come into it, anymore than working with any child. 

I believe hundreds of boys were auditioned for the role. Why not a single autistic? I find it hard to believe there wasn’t a single autistic child in Britain who could have played the part. They might have had to expand out, and not limit themselves to a six year old white boy. And if a great autistic actor were  found, but they were ten, or black, or a girl, or any other variation, the show could have been re-written to reflect that.  And would, in my opinion, have been the better for it. 

Yes, The A Word is a very good show. But it could have been so much better.  It could have featured an autistic actor playing the central character. It could have broken the stereotype of autistics only being six year old white boys. 

But what does my opinion matter anyway? It’s clear to me that those to do with the show don’t care about the opinions of this adult autistic. Hopefully, some of my readers do. 

 
[ image is of a bright yellow background, with the words ‘Acting Autistic’ written in black ]

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The Birthday Party

My son had a party today for his ninth birthday. This post is not about him. It’s about me, and how stressed and anxious I get about things others don’t worry much about. 

He asked me over a week ago if he could have a “family and friends party, not just a family party, this time”. My initial reaction was “no way in hell”. 

Flashbacks to parties I had for them when they were little. Only one kid turning up, and that only because their mom or dad was childhood friends with my husband. Kids (not mine) looking obviously bored, asking when the other kids were going to turn up. Figuring out that this wasn’t a party quite like all the others. Parents, delivering or collecting, having furtive looks around the house while praising the neighbourhood. Knowing they were clocking the cobwebs. 

I tried to convince him to have it somewhere else. The aquarium does nice kids parties. But, obviously, I had missed the point. It was to be a “gaming” party, where they all play with him on his WiiU. Naturally. 

How many kids was the next question. Only four. Four more than I would have liked, but not as bad as I’d been expecting. These were his ‘friends’, who sat at his table, two boys and two girls. Fine. 

I found some games controller symbols and used them to add a strong “this is a gaming party” hint to the invites. And handed them to him. No going back now. 

And so, the wait and anxiety set in. Who would bother to RSVP. What if nobody came? What if they all came but had a bad time? What if , what if, what if. 

And I kept thinking, why oh why did he have to go and want an actual party with friends. Why couldn’t we have carried on our tradition of going on excursions, just the four of us, (or at most, with close family) instead. Like when we’d gone to Aillwee Cave with his Galway uncles and aunts and cousins and granny, or when we went to Dingle Oceanworld with my mom and sister. Or like last year, when we went to Tayto Park, just the four of us. 

But then I felt guilty. I should be happy he’s made some friends. He used to not talk to any children besides his sister and cousins. And now he has friends, or at least people he calls friends. And I’m trying to get in the way of that, due to my own anxiety. Bad mother!

And so I spent the week worrying. My husband couldn’t understand why. “What’s the fuss? They’ll come over, play video games, eat pizza and cake, and go home with a goodie bag.”

Of course, if you put it that way… And so, I tried to think of it as ” a play date with extra nice food and goodie bags.” And that made me relax a little. And I baked the requested cake (a Mario One-Up Mushroom cake), and I made up goodie bags with treats and toys (from Tiger of course!) which I decorated with Minecraft stickers. And I got up at 8am and scrubbed the house from top to bottom (not that the kids noticed). And two of the kids RSVPed (and turned up on time). One boy and one girl. I’ll add a quote from my son “to be honest, I’m not too disappointed about that because I only have three remotes.” 

And they played video games, ate pizza and cake, played ball with the dog, and went home with goodie bags. And all enjoyed themselves a lot. It was a piece of cake! And so, I won’t hesitate (as much) if my son wants another one next year. Heck, I might even see if those kids want to come over on play dates. (Gulp! Another anxiety-inducer for me.)

We’ll see…

[image of a kitchen table, with a striped orange and white tablecloth, containing bowls of sweets, crisps, drinks, paper plates and cups, pizza, and a home-made Mario One-Up Mushroom cake, surrounded by nine candles, and artfully strewn with various figurines from Mario games, including Bowser, Princess Peach and Fire Mario.]

Planning to be spontaneous. 

Yesterday, we drove down to Limerick to see a doctor. (Who confirmed our daughter is autistic.) Seeing new doctors is stressful enough at the best of times. Seeing one in a city I’m not too familiar with, is incredibly nerve-wracking. I don’t do unfamiliar. I don’t do new. I don’t do surprises. 

So, I entered the address into Google Maps. It found the correct road, but not the exact location. Immediate heart racing situation. My husband, to calm me down, said I could phone to get more precise directions when we got closer. Which increased my panic, as I also don’t do phone calls. Especially to secretaries of doctors I’ve never met. 

So, we left for the appointment an hour earlier than we needed to. And, as always happens when I’m stressed and travelling, I was living off nervous energy and couldn’t eat. At least I brought plenty of snacks. 

As it happened, we got hopelessly lost. And nobody we asked had heard of the place. And nobody at the doctor’s answered the phone. I finally found it on a different map, and we got there eventually. Half an hour early. Phew!

And this is why I need to plan as much as I can. To limit the number of things that might go wrong. To try and have a sense of control. 

But maybe I should veer off my plan more often, try to be more spontaneous. 

The plan had been, doctor then lunch somewhere nearby, then straight home. But on the way home, we passed by Bunratty Castle and Folk Park. And my daughter expressed an interest in visiting it. Normally, she’s like me and doesn’t like going anywhere new. But since she’d asked, we decided to take a chance and go in. Just like that. 

We had only planned on a very quick visit. But it turned out to be a fantastic place, with so much to see*.The castle is quite extensive and the artwork in it exquisite. We saw the dungeons and the kids sat on wooden thrones and examined the drawbridge mechanism. Then we climbed the narrow staircase up one of the towers, to the top. Turned out to be a bit of a mistake, as my knees don’t like stairs and I ended up hobbling back down. While me and my daughter rested in the Great Hall, the other two examined the rest of the castle and came back with tales of all we’d missed. 

I had thought that would have been it, but the Folk Park part was too good to miss. For this, they transplanted actual cottages and houses from various parts of the country and recreated turn of the century Ireland. Everything from one room thatched shacks, to grand Georgian mansions. Even a two-roomed Schoolhouse, like the one I attended for a year when I lived in Ventry. And an old style pub like the one my husband’s family owns. 

However, as we explored more and more, my knees and legs ached more. And so I did another spontaneous thing I hardly ever do. I called it a day, and me and my daughter headed back to the car, again missing half of the exhibits, which the other two went on to explore. In the past, I would have kept going, through fear of missing out, while becoming more and more impatient and agitated, and finally having a meltdown. Instead, we chilled out in the car, but not before buying The Most Expensive Scones in Ireland, in the Tearooms. (€3 each!!!)

So, we ended up home much later than I had planned. Exhausted and sore, but calm and happy. I went new places, and not only survived but enjoyed myself. So, I think I might plan on being a bit more spontaneous in the future. But not too much! 

*unfortunately I’ve no photos, as my phone has no spare capacity for photos, and I hadn’t brought a camera, as I hadn’t planned on visiting anywhere worthy of photos. I might ask my husband if he took suitable ones, but think most of his included the kids. So including just a generic drawing of a castle! Not drawn by me! 
UPDATE: two days later and I’m still in pain and can barely get out of bed. Being spontaneous can have repercussions! 

[image of a line drawing, in black, of a castle, with two towers, one on either side of the main castle building, with a white background.]

  

Passion. 

I imagine most people reading this will have been passionate about something, at least once in their lives. Maybe an actor or band or football team? Maybe a TV show you just had to watch? Something you thought about constantly and chatted to your friends about. Something you aced when quizzed about it during a table quiz. Maybe you hung posters up in your bedroom and gazed at them instead of doing your homework. Maybe you bought merchandise. 

And maybe you changed as you grew older, found a different but equally strong passion. Perhaps your career or family. Maybe you got into politics. Or gardening. Or sailing. And people would remark how dedicated you were, how you showed such commitment. 

Now, maybe people found out you were autistic. Suddenly, you can no longer have a passion. Imagine having your passion labelled an ‘obsession’ instead. Imagine hearing the word ‘perseveration’ and learning the negative connotations. 

As usual, autistic people are held to very different standards than anyone else. 

And so, I say “No”. I am not obsessed, I am not perseverating. I am passionate. 

I am passionately passionate about being Autistic. I cannot be anything less. 

[ image with red background and the following words in black: I am passionately passionate about being Autistic. ]
  

Losing. 

TW mention of weight loss, but no numbers.

Today, on a whim, I bought a dress. A cute denim dungaree style dress. The type I have always adored.

And yet, instead of being delighted with my frugal €10 purchase, I am ashamed.

The reason for my shame is that I bought it in the Children’s Department, and it fit. Yes, I bought the largest size available, so a large kid. But that doesn’t make me feel any better.

I have “always” bought clothes in children’s departments. Or at least that was true until I realised my tiny size was not due to being ‘naturally thin’ but to unwitting restriction. And so I put in a huge effort into gaining weight and cast aside my tiny clothes. And it felt good. Good to finally develop adult proportions, to fit into adult clothes. I even managed to gain an inch in height. Not bad for a 38 year old!

But the last year has not been good to me. My digestive issues, my fatigue, my general ill health, have all conspired with my anxiety, to push me into a downward spiral.

And this dress is the proof of that. As if I needed more proof. I don’t weigh myself, but was weighed at a recent hospital visit and the number on the scale was back to my ‘usual’ number. The number I was back at the start of recovery. Not the lowest I’ve ever been, but an indication of how far I’ve slipped.

For me, losing weight means I’m losing my health. Losing the fight. Losing hope. Losing my mind.

I think I’ll return the dress. I think that’s the grown up thing to do in this situation!

[image of a female presenting person, from neck down, wearing a short, light blue denim dungaree style dress. ]

April showers

This is my first April embracing my autistic self. Not even a week in, and I’m worn down. Ground down. Beaten up. Even though I’ve tried my best to protect myself from the onslaught. I had thought I’d be blogging about All Things Autistic. But I can’t. I don’t have the words. I may or may not be able to write about autistic issues at some stage this month. I don’t know yet. I might just stick to safer topics.

April hangs over me like a big blue cloud.  A big gloomy cloud bringing icy showers. Every now and then, the sun peeps out. I am hanging on, from one sunbeam to the next. Hopefully May will bring better weather.

[image of a pane of glass, covered in raindrops, and with a blue tint.]

Confessions of a Tiger-holic. 

I have a confession to make. I am addicted to shopping in Tiger Stores. For those of you not familiar with them, Tiger Stores are a chain of stores from Denmark that produce goods low in price but high in design and quality. You can check out their website here. There’s a store in my local shopping centre, and I simply can’t walk past it without going in. And I can’t go in, without buying something. And I can’t buy just one thing without somehow walking out with many many items. And so engrossed am I when browsing, my kids get jealous and so refuse to let me walk in the direction of the store while out with them. Their catchphrase is “Oh, no, not TIIIIGER!!!!” if I dare even mention going there.

So, I sneak there while they are in school. The ultimate in self-care!

Also, as an autistic person, so much of their stuff is so ‘stimmy’ eg twinkly lights, fake slime, tassels, soft natural fabrics and textures. And as a chronically ill person, they have a lot of items such as massagers, ointments, ice packs. And they try to source things as ethically as possible.

To illustrate why I love it so much, the rest of this post is going to be a series of photos of just a tiny proportion of the items I’ve bought in Tiger over the years. And not included are all the gifts I’ve bought for others. One Christmas, I bought every single Christmas present from there, and had fun making up hampers etc. Also not included in the photos are all the great drinks and snacks they sell. Including the best Pretzels I’ve ever had. And their legendary bottles of Chocolate Milk.

So, in no particular order, here are some of my Tiger goodies. I’ll describe what they are in the image descriptions.

[ image of various items. From left to right: battery operated string of coloured globe lights, child’s red baseball cap with wings reminiscent of Mario’s Wing Cap, a glass sculpture of a blue owl, a heart shaped nail brush, a revolving heart shaped nightlight that projects heart shapes, a wind up chick, a battery operated string of heart shaped red lights.]

[ image of various items. From left to right: open pack contains two pencils with pencil grips, a kid’s dough set containing six pots of play dough in various colours, a box of giant pipe cleaners, a memory game using tiles containing letters of the alphabet, a knitting doll set, a purple octopus tentacle made of silicone that fits on your finger, a blue Spirograph set, a sea battle game similar to Battleship, a small white canvas.]

[ image of various items. From left to right: a kids umbrella with goldfish design, a drawing pad, a paintbox, a box of thick straws, a small glass with strawberry design, a carrier bag listing some of the countries where Tiger has stores, a travel-size Connect Four type game, a kids umbrella with fox design.]

[ image of various items. From left to right: instant icepack, brown satin sleep mask, blue knee band, balance board, exercise band, China balm similar to Tiger Balm, grip strengthener, kids skipping rope, massage roller designed like a plant in a pot, wooden massage roller with four rollers, blue space hopper with monster design, wooden and rope hoop game. ]

[image of various items. From left to right: pink and white gardening gloves, pack of marigold seeds, pack of sweet pea seeds, nursery tray, wooden gardening labels, garden twine, outdoor thermometer.]

[ image of various items. From left to right: pack of circus themed snap cards, fishing game in a tin, box of mosaic blocks, large bottle of bubble mixture, rope loop to make giant bubbles, tube of various coloured glow sticks, activity book, adult colouring book, sellotape in dispenser, bingo game, turn-handle pencil sharpener shaped like circus strongman, balance block game in tin, memory game of hoop shaped tiles, chunky colouring pencils, glass bead set, soft microbead filled cat toy.]

As you can see, a huge variety of items, from toys to household items, gardening to sport to art supplies. And I don’t think I’ve spend over €15 on any one item. Most cost between €2 and €5. I’ve a lot more, but I can’t be bothered gathering them all up from around the house and photographing them.

Tiger Stores haven’t paid me to write all this. But if they did, I’d just go and spend every penny and more buying more of their stuff. I really can’t help myself!