Autism Myths

When thinking of autism most people will conjure up images of some sort of stereotype, quite often in the form of either Sheldon Cooper or Dustin Hoffman's Rain Man. While some autistics may have certain qualities and/or "super powers" reminiscent of these stereotypes, autistics are much more than just the visible traits seen in the media.

Fellow autism advocate Christa Holmans (Neurodivergent Rebel on YouTube) did a short series of "You can't be autistic because..." videos on her channel that addressed some myths around what people think autism is/isn't. Just because I think she's bloody brilliant I'm going to use one of the myths that she busted as an example for this post. In one particular video she addressed the myth that "You can't be autistic because you have empathy." While some autistics do lack empathy (I do struggle with empathy unless it relates to someone I know and/or care about) the majority of us find that we either have too much empathy, or we just don't know how to show it even though we're feeling empathy. These could result in any number of outward responses depending on the person. Some may be overwhelmed by their empathy, some may not show any outwards signs because they don't know how to, and for others like me it varies depending on the person or situation. For me, even if I do feel a lot of empathy I don't really know what to do with it. If it's my wife who's feeling upset for example, I'll cuddle her and try to talk to her even though I don't know what to say. I don't think I'm empathetic to most people, and overall I'm more empathetic towards animals than people.

Judging by my dad's reaction to me getting assessed for autism I think the reason he's not convinced is because all he can see is the stereotype that we're all severely handicapped and dependent on full time care. Our needs are many and varied, and each person's needs are different from each other. In my case, I've been holding down a full time job for 9 years until recent weeks (I'm still working but had to go part time due to unrelated circumstances), I'm happily married, I'm a dad of 2, I drive, I do a lot of other things that a stereotypical view of autism wouldn't allow. I'm hardly handicapped. And while I admittedly think I'd struggle to live fully independently I'm independent enough to do all of the things above. There are definitely things I struggle with such as dealing with finances and remembering self-care aspects if my routine has been disturbed but I'm far, far from the image that my dad has of autism.

There are misconceptions that we all have "super powers" in the vein of Rain Man who is able to instantly count the number of toothpicks being dropped. Some people do have intense skills not usually seen in neurotypicals, but not all of us do. I remember seeing something online a few years ago about an autistic artist who accurately drew the New York skyline purely from memory. In contrast I've got no intense skills that I know of, just a determined mindset when I'm trying to do something that sees me putting more effort in to achieve an outcome than neurotypicals would. When I used to go to the gym a lot in my early 20's my personal trainer told me I was one of the hardest workers in the entire gym. At work my team leader has got me involved in a project analysing the team stats because I like analysing figures and if I'm stuck I'll either keep working at it or ask for help from someone who knows what they're doing. It's this determination that gets me to where I want to be. In fairness, people with extreme skills might rely on determination like this a lot more than it seems from an outside perspective, but it could be a mix of society's view of autism as well as unseen internal effort that makes it look more natural and easy than it is.

People often don't consider that if somebody doesn't show any physical signs of disability it doesn't mean they're not disabled. Disabilities can also be mental/emotional, and regardless of whether it's physical or mental, a lot of disabilities can fluctuate meaning some days they're bad and some days they're not. Autism is referred to as the invisible disability for a reason and is legally considered a disability in the UK, although some autistics might not consider themselves disabled depending on how much it affects them in daily life. Things like sunflower lanyards are great for highlighting when somebody might have hidden struggles or need extra support while in a public space. In fact, I was recently on holiday at Butlins with the wife and kids, and when we were in the club one night for one of the shows there was a young boy at the table next to us with a sunflower lanyard. I did wonder if he was autistic but there are lots of other possibilities that it could be. Either way, I don't like to ask people if they're autistic - I let them approach me about it when they notice my "This is what autism looks like" hoodie, which has happened a couple of times recently.

These are just a few examples of the myths and stereotypes that surround autism, although there are many more. If this post has been interesting and you'd like to see more please click Subscribe at the top of the page and follow me on social media. I'm @DepictDave on Twitter, Facebook, Instagram, Pinterest, and you can buy me a coffee at my Ko-Fi account here.

[Image description: Question marks on a white background. The middle one is the biggest and is in rainbow colours to represent autism. The others are black, various sizes and scattered around the image. At the bottom of the image is the word "Autism" in rainbow colours and "Myths" directly under it in black.]

Friendships

As an autistic person I've always struggled to make friends. That's not to say I've never had friends because I absolutely have, but the few friendships I somehow managed to make were mostly temporary and often circumstantial. I had a couple of friends at college but as soon as we graduated we pretty much stopped talking to each other. When I was at school I had a couple of friends who I spent pretty much all my time with, but didn't make friends with anyone outside of our little group of 3 until much later on in the final year of school. Looking back now they weren't all they were cracked up to be as friends, but I enjoyed what I had.

I think one of the reasons that I've never found it easy to make friends is because my special interests have never matched up with what anybody else was interested in so I didn't have anything to talk about. I've always found it hard to know what to say to other people, especially if I don't know them. Similarly, if I see anybody I haven't seen in ages I struggle to know what to say there too, which is why I don't like meeting up with people I haven't seen in years. It's like my head reverts back to them being complete strangers and I start getting anxious, even though I'm a lot more comfortable with those exact same people if I see or hear from them on a regular basis. I wouldn't go as far as saying it makes me more socially competent, but it makes me more comfortable if nothing else.

I think my definition of friendship has changed as well as I've grown older. When I was younger I used to define a friend as somebody I would be happy to go out to a pub with for example. I once explained to some colleagues at one of my old work places that there are lots of people working there who I like and get one with, but nobody I would consider a friend. There were only a handful of people at the time who I would have happy gone on a night out with, and there are even less of them these days. Nothing against most of the people I knew or work/ed with, it's just that I don't value most people's company as much as spending some quiet time on my own in peace.

Nowadays I've come to realise that I wouldn't even necessarily want to go on a night out with a friend. For example, my current team leader at work is probably the closest thing in-work that I've got to a friend. I help her with a few work bits and she's really been there for me when I needed her, brought me out of my shell and massively helped me raise my game at work. I'll be sad to lose her as my team leader when things at work change over the next couple of months, but we'll still be around to see each other which I'm glad about but that doesn't mean I'd want to go on a night out with her. I feel more comfortable going out as a team so that there are at least a few other people there meaning I can fade into the background when I need to. Just as another quick example, there's my friend Emma who I met on Twitter (you can check out her mental health blog here). We've never met in person and I can't say I'm overly keen to change that, but we've got a couple of things in common and we've tried to be there for each other when we needed it so I consider her a friend even though we don't talk online that much.

Going back to my friendships being circumstantial for a minute, almost all of my nights out when I was single had a purpose. That was to get me out and about and hopefully meet someone to start a romantic relationship with. Of course it never worked until I met my wife when I wasn't even trying to (I had bigger things to worry about that night), and it's not that I didn't like being around my friends and have fun because I really did, but for me the centre of every night out was putting myself out there to find love. Looking back, my friends did put up with a lot from me and I appreciate them being there because the search for love in itself became somewhat of an autistic special interest consuming almost every part of my life - which ironically is probably a reason it didn't work! I met my wife one night when I was doing stand-up comedy and was too preoccupied with my set and how badly it failed to worry about meeting anyone, but I did. My comedy group was another set of friends who I almost immediately fell out of touch with as soon as I started working full time and got together with Sarah so I didn't have the time to commit to the actual comedy any more like I used to.

I guess at the core of what I'm trying to say is that I don't gain anything from sociable interaction. It could either be because I'm autistic, or because I'd learned due to bullying etc that I'm better off staying reasonably isolated, or it could be a mix of both. I often wonder what neurotypicals get out of socialising with each other, and especially from small talk. To me, talking to people is a way to get information. I really don't believe that I need or want 90% of the information that people seem to give and take from each other but for some reason that I'll never understand they enjoy it. A perfect conversation for me is if one of us asks for information or an outcome, the other one gives it, and that's the end of it, we both go about our day. I feel very similarly about reading as well. It's rare that I'll ready anything for the enjoyment of it, but if it's something I want or need to know then I'll end up reading everything that I can find about it.

So that's how my autistic mind is with friendships. I'm sure a lot of autistics will likely agree with me, and so I hope it's given you an interesting insight into how we - or at least I - tick. If so, please click Subscribe at the top of the page and follow me on social media. I'm @DepictDave on Twitter, Facebook, Instagram, Pinterest, and you can buy me a coffee at my Ko-Fi account here.

[Image description: A handshake between a black hand and a white hand. The image is on a white background with "Autism" towards the bottom in rainbow colours, and "Friendships" under that in black.]

World Autism Awareness Week 2020

Next week is World Autism Awareness Week (30th March to 5th April), making now feel like the perfect time to come back from my blogging break. There's been lots going on while I've been on break, mainly the country-wide self-isolation caused by Coronavirus at the moment. Even in the midst of the pandemic I've been hard at work on a project to raise funds for an autism charity.

The charity that I'm supporting is Autistic Inclusive Meets, which is an organisation based in London and run by autistics, for autistics. They were chosen through a Twitter poll and won by a landslide. To visit their website please click here. So what's the project I've been working on? It's been quite a fun one for me to work on because it involves my most recent interest and it's something I've never done before. I've made a custom Pop vinyl figure of my favourite autism advocate - the brilliant Christa Holmans, a.k.a. Neurodivergent Rebel! I was planning to run through the process of making the figure and the things I've learned, but it'd make the post too long so I'll probably do a separate post just to go through it.
Disclaimer: The custom vinyl figure that I've made as shown and described in this post is NOT an official Funko product, and has in no way been agreed, licensed or endorsed by Funko.

This is now going to be delayed due to us being on lockdown here in the UK, but the plan was to sell the figure (pictured at the bottom of this post) on eBay with the listing running from 30th March to 5th April - the entirety of World Autism Awareness Week. The full selling price (minus postage cost) will be donated to Autistic Inclusive Meets. I fully appreciate that the Coronavirus pandemic is affecting many of us financially, which is one of the reasons I've chosen to delay it. The main reason though is that with us being on lockdown we can now face fines for leaving home for non-essential reasons. Once the listing is up on eBay I'll let you all know, and even if you can't or don't want to bid it would be a massive help if you could share the listing on social media. It's for a fantastic cause, and it's a great opportunity to get your hands on your own mini Neuro Rebel!

While we're on the subject of the pandemic, it is also affecting the other activity that I had planned for next week. Making and selling the figure of Christa was obviously for the purpose of fund raising during WAAW. I was also planning on raising awareness/acceptance by going out into my local community in York and surveying people on their understanding of autism, their their thoughts on it and generally getting a picture of how the people in my local area view autism as a whole. That's now not doable, so I might look at turning it into an online survey and trying to get a wider view of autism rather than just from my local area. If I can do that I'll add a short special post on Monday with a link to share.

A massive thank you to Christa for getting on board with the idea and supporting me by sharing the eBay listing when the time comes. Support from one of the more well known advocates means a lot to me and hopefully together we can do some good for Autistic Inclusive Meets.

As a final note I want to acknowledge that I know that some people dislike and disagree with World Autism Awareness Week because after all, autism exists for more than one week per year and we need acceptance rather than just awareness. I completely agree with those points and I'll be addressing my view on WAAW itself in next week's post. In the meantime, please click Subscribe at the top of the page and follow me on social media. I'm @DepictDave on Twitter, Facebook, Instagram, Pinterest. My Facebook page and Pinterest account are brand new so I'd hugely appreciate a boost from lots of new followers, and now you can even buy me a (metaphorical) coffee at my Ko-Fi account here.

[Image description: The custom vinyl figure that I made of Christa Holmans. Funko Pops are short figures of around 3.5inches in height that have over-sized heads compared to their bodies, large black circles for eyes and no mouth, giving them a cartoonish appearance. This figure has Christa's oval-shaped glasses, her green, blue and purple hair which is shorter on one side, red Converse shoes, dark grey trousers and a lighter grey t-shirt featuring a rainbow infinity symbol which is currently the most recognised symbol of autism.]

Autistic Burnout

Over the last couple of weeks I've mainly had to rely on information that I've researched or seen on social media to explain meltdowns and shutdowns as I've never experienced one of them, and only think that I've experienced the other. This week is different though because this week we're discussing burnout, and I've definitely burnt myself out at least a couple of times since learning about autism. So I'll be going on my own experience more than anything else this time.

From my own personal experience burnout is horrible and feels a lot like a depression, but in my experience of depression it comes with a lack of motivation whereas burnout comes with a lack of energy. Not physical energy, but mental energy and the ability to really do or handle anything unless absolutely necessary. My most recent burnout didn't have anything specific that caused it. It was just a result of lots and lots of different things going on in my life at the same time, and - as I told work - "everything piling on top of me". But with that in mind other people may experience burnout from just 1 specific event that they're exposed to. I've heard lots of people mention that they've had burnout immediately following a meltdown because of the emotional energy it takes.

That's what burnout is. It's just like when a match burns down to the end and there's no more match to fuel the fire so the fire burns out. I've seen people describe it in more spiritual terms such as like their mind running out of energy so it disconnects from the body for a while, but the gist of it is the same even though everybody experiences it differently. It's the nature of not only autism but diversity in general that everybody experiences things differently, so differing reports are to be expected.

So how do you recover from burnout? In my case I just couldn't face anything that I could avoid so instead of doing whatever it was that we had planned we went home, I rang in sick to work and I spent the next couple of days resting and recovering in bed. Just like when a phone or other gadget runs out of charge the best thing to do is leave it alone and let it charge (plugged in, obviously), the best way to recover from burnout is to take the time you need to recover and recharge your energy/your batteries/your spoons or whatever you want to call it. Bed is the best place to spend this time in my case, but if you do anything while you're recovering it should be something simple and enjoyable like watching crap TV. The only thing to do if you're another person looking after the autistic person in burnout is just to give them the space and time to recharge themselves but still be there for anything they might need. The first time I recognised that I was in burnout we were going to go out somewhere but I couldn't face it so I stayed at home and my wife took the kids out without me. I then spent the day lying on the sofa and I felt like that was the best thing I could have possibly done. I didn't sleep but the rest did me so much good the time just seemed to fly by.

I realise that I've just said to stay with the person then contradicted myself by saying I stayed at home alone but that's just my preference, especially given that I wouldn't have gotten any rest with the kids around. Again, each person is different and may have different needs such as if they've got any other health issues (mental or otherwise) that mean they need to be looked after. Just like I've said through each of these meltdown/shutdown/burnout posts, it's important to know the person you're looking after where possible.

Autistic Shutdown

Last week we looked at autistic meltdown, so this week let's have a look at shutdown. Autistic shutdown is another response to stress and over stimulation. Shutdown and meltdown can be seen as opposites in that meltdown is an outward release of built up energy from the fight or flight response, whereas shutdown is much more internalised and the body's effort at closing itself off from the world around it.

Shutdown can be much more difficult to spot because it can often present itself as "normal" behaviours such as scrolling on a phone for example, but much more intensely. It can also involve playing with any other easily manipulated objects such as a spinning globe or a soft, squashy toy. With that said, there are also more obvious signs which include the person visibly retreating into themselves (either keeping their head down, curling into a foetal position, hiding under/in things etc), or at least appearing very distant as if they're "in a world of their own". Even with the more noticeable signs though, it can often be mistaken for depression so it's important to know the person and their behaviours where possible to be able to identify a shutdown.

I think I have experienced shutdown before but I'm not 100% sure. Because I was late-diagnosed there are times that I look back on now and I think that probably was a shut down. One that springs to mind was around 10 years ago after my relationship with an ex-girlfriend ended. It took me a long, long time to move on from her (quite possibly as part of the intense interests that come with being autistic), and in that time there were 1 or 2 occasions where I shut myself in my bedroom, sat on my bed with my back to the wall in a kind of vertical foetal position with my knees up and my arms holding them close to my chest, I put my headphones on and listened to the song Ghost Love Score by Nightwish repeatedly for who knows how long. It's difficult for me to know for definite whether anything that I think may have been a shutdown actually was a shutdown because I didn't have any knowledge or awareness of autism at the time, and my alexithymia means I didn't really know what I was feeling, even at the time. But I do suspect believe that incidents like that were shutdowns.

So, how to help a shutting down autistic? During a shutdown the person will largely not do much if anything at all, but both shutdowns and meltdowns can have a negative mental effect on them that can cause them to do things that are detrimental. There are cases that I'm aware of where people have done things like cutting their hair off or thrown things away because they didn't feel like they deserved it, or on the more extreme end it can lead to self harm and suicide attempts. In terms of safety there's not as much to do when helping a person in shutdown as there is with a person in meltdown, but there's still the same responsibility to make sure that they don't do anything dangerous as well as getting them to a safe, isolated or sensory-friendly place if necessary. Other than that it's just down to the autistic person's preferences really. Some might not want you to touch them, whereas others might benefit from a tight hug if pressure is something that helps ground them. Some might need silence during their shutdown while others might prefer quiet music if possible.This is why it's important to familiarise yourself with their preferences if at all possible as it can vary so much from person to person. The last help/safety tip I can give is that regardless of the person's preferences it's important to keep communication to a minimum, much the same as during a meltdown. Short, simple phrases and questions are best to help the autistic person feel comfortable and supported.

Now we've covered meltdown and shutdown over the last couple of weeks, so next week's post will be about burnout. Stay tuned here, and also on my my new Twitter account @DepictDave that I set up specifically for blog news and updates!

Autistic Meltdown

Meltdowns, shutdowns and burnout are all responses to over stimulation that are typically seen in autistic people. While I can't say I've personally experienced all 3 of these responses I've gathered enough information through research and the online autistic community to hopefully be able to accurately explain each one in an informative and helpful way. I was planning to cover all 3 of them in this post but while writing I realised that I had quite a lot to say about just meltdowns alone, so I thought I should leave shutdowns and burnout for another time - probably next week and/or the week after.

Meltdowns are probably the most commonly observed of the 3 from an outside or neurotypical perspective, and most people who see autistic meltdowns in children will mistake them for just childish tantrums. In reality though, they're far from it. A meltdown can occur in autistic children and adults alike, and not all autistic people experience them - I for example have never had one as far as I know. A meltdown is when the person's senses are overloaded from any external stimuli that they may be hyper sensitive to. This stimuli triggers the fight or flight response causing a need for the person to urgently get away to somewhere they can recover (flight), or it causes an outburst that can present itself in many different forms such as screaming, crying, hitting/kicking, self harm and more. Just as a point of reference there's a scene in Atypical on Netflix where Sam (the autistic main character) tries to flee from a situation to avoid a meltdown, but he can't escape it and ends up having a meltdown on the bus home. It's a difficult scene to watch but I think it makes a valid point in that meltdowns can happen anywhere and any time to autistics of any age and it gives an idea of what a meltdown might look like, although each person's meltdowns will be different.

Going back for a minute to meltdowns often being mistaken for tantrums, I think it's important to explain the difference. A tantrum is a behaviour carried out by children (usually when they don't get their own way) and is their way of displaying that they're unhappy with what's happening. A meltdown is an involuntary loss of emotional control in response to an external stimuli that the person is hypersensitive to, such as bright lights or loud noises for example. A meltdown does not mean that the person is a naughty child or a bad person, it's just their body's way of coping with the over stimulation by either fleeing to safety and/or physically expending the energy built up for the fight or flight response. It's also worth noting the wording I used a moment ago where I said it's a loss of control rather than a lack of control. It's not something that the person can help, it's not permanent and it also doesn't mean that they generally can't control their own actions.

I want to mention a few safety tips for both the person having a meltdown, and anybody that may be with them and/or looking after them. First of all for the person melting down, if you're going to be in a situation where you think a meltdown might happen please do what you can to avoid any hazards. For example, try to keep yourself away from any objects that might harm you or any height that you might fall from. Try to surround yourself with people who understand when you're melting down and what they can do to help you when you do. If you find yourself punching, kicking, headbutting or anything like that during a meltdown please try to do it into something soft that's not going to harm you like a pillow, and again try to distance yourself from objects that you could use for self harm.

Now, for any person who may be with the autistic person when they meltdown. Please do your best to make sure they stick to the safety advice above by removing any hazards or asking for help from other people if you need it/if it's available. Other than that the best thing you can do is stay with them to keep them safe, but at the same time leave them to it to get it all out of their system. When the meltdown is over the person will most likely be exhausted and upset, and depending on the person it can take anything up to a few days for them to fully recover. While you're helping them try to keep communication to a minimum by using short, direct phrases as they won't feel like talking much. For example if you want to offer them a drink, just asking "Drink?" would be far better than chatting unnecessarily. They can then just answer yes or no and still be as comfortable as they can be. Above all else, the person will just need to feel supported so do what you can in each situation to ensure that for them.

So that's a brief overview on meltdowns. As I've never had a meltdown myself I hope that I've used the information I've gathered to put together a helpful post for anybody interested or experiencing it. If there's anything I've missed or got wrong please feel free to share and discuss in the comments. I'll cover burnout and shutdown in a later post so stay tuned!