Addressing A Problematic Article

My attention has been drawn to an article by Tom Clements on The Guardian's opinions section of their website. The article is titled What Is Autism? How The Term Became Too Broad To Have Meaning Any More and revolves around a recent study that apparently concluded that the difference between neurotypical people and autistic people is shrinking. In 10 years Dr. Laurent Mottron who conducted the study believes that there will be no difference at all.

Let me go through the article and address some of the issues with it and why it's drawn the ire of the autistic community. In the very first paragraph Clements states that autism means different things to different people (fair enough, the autistic spectrum is a broad one meaning no 2 autistic people are the same) and ranges from just being socially awkward to being "a medical disability that entails unpredictable bouts of aggression resulting in torn upholstery, cracked skulls and savage bites." These bouts of aggression that he refers to are not bouts of aggression at all, they're autistic meltdowns. I've already covered what a meltdown is in a post a few weeks back but just to reiterate, a meltdown is the body's response to overload whether that's from sensory input, stress or anything else. Because of the distressing nature of meltdowns it can mean that some people hurt themselves while in meltdown, which is why I offered some safety tips in the other post. But the vast majority of autistics don't hurt anybody else despite what's implied by the words "cracked skulls and savage bites." If an autistic person is being aggressive and proving to be a risk to those around them, chances are there's something more than autism going on.

The next thing the article states is that families of autistics "often experience PTSD and stress similar to that of combat veterans." This statement alone is incredibly harmful as it depicts the families of autistic loved ones as victims of some horrible disease or atrocity that nobody deserves to ever go through. While admittedly some families with autistic members do struggle, it depends on the individual because - as I mentioned before - autism is a broad spectrum that affects everyone differently. The family's level of understanding and acceptance can also play a huge role in how much they struggle.

Clements' article later goes on to bash the neurodiversity movement, saying that it trivialises conditions such as autism, ADHD, dyslexia and dyspraxia, and also that it's exclusionary of those on the "severe" end of the spectrum. Neurodiversity does what it says on the tin. It encompasses any and all neurological types. While it may be difficult to reach out to individuals who may for example be non-verbal or require regular support or representation, what neurodiversity is all about is instilling the mindset that every life is equally valuable and having a different neurotype to somebody else is no different to having a different skin colour or a different gender. Clements again takes a shot at those whose autism has more of an obvious external effect by saying that you won't see any autistics at a workplace neurodiversity event who have an IQ under 30 and regularly lash out and soil themselves. Again, the kind of people that he's referring to more than likely have other issues aside from autism.

Another point that the article makes is that by advocating for ourselves we autistics are creating a divide between us and autism parents, and he also follows up on his put down of self-advocacy by taking a shot at self-diagnosis, which I'll get to in a minute. At the end of the day nobody knows an experience better than those who have lived it. When I still lived at home my dad would sometimes be a backseat driver despite the fact that I've been driving since I was 20 and he's never driven a car in his life. As a driver I'm the one who's qualified to comment on driving, just like as an autistic person I'm qualified to explain and describe autism to neurotypicals. Rightly or wrongly, autism parents do have a reputation for playing the victim and wanting their child's autism cured, although in fairness I have seen some autism parents on Twitter actively asking for help and support directly from autistics using the hashtag #AskingAutistics, and this is how it should be.

With regard to self-diagnosis, Clements credits this for the watering down of the term autism and discredits it as nothing more than a fashion label. Self-diagnosis is perfectly valid, and anyone who genuinely identifies as autistic (regardless of any formal diagnosis - or lack thereof) is more than welcome in the autistic community. Without going into too much details, the reasons for this include but are by no means limited to:
- The fact that it's difficult to actually get a diagnosis (I myself went through 2 separate assessments and waited a number of years before I was finally diagnosed this past December),
- Diagnosis can depend on gender although autism is now being increasing recognised in women which is great, and
- Ultimately, who knows you better than you?

One of the final things that Clements does in his article is he makes a comparison between his own autism which he claims was diagnosed as "upper-end autism", and his brother's autism who he notes will need full time care for the rest of his life. He also states that himself and his brother clearly have completely separate conditions. Now I don't pretend to know anything about his brother, but if his brother is anything like the comments Clements has made regarding unpredictable violence, soiling themselves and so on, at the risk of sounding like a broken record I'm going to say that there are probably other things going on besides autism. And if that's the case then he's absolutely right - he and his brother do have completely separate conditions although they both share the fact that they're autistic.

Clements concludes his article by saying that autism needs to be divided into separate conditions and that we should start by reintroducing Asperger's syndrome, which is still currently being phased out in many areas. I'm actually planning a whole separate post on Asperger's for a later date, but just quickly, the reason Asperger's is being phased out is because if somebody is diagnosed with Asperger's it doesn't mean they're any less autistic than somebody diagnosed with autism/ASD. And also, there are many people who no longer want the label of Asperger's after the news came out not too long ago that Hans Asperger was a Nazi sympathiser and they don't want to be associated with a condition named after somebody who did the things he did.

The closing sentence of the article states that Clement's intentions are to look out for the wellbeing of the most vulnerable in society, and for the "lower end" of autism to be treated with the seriousness that it deserves. I completely understand and appreciate his intentions in standing up for society's most vulnerable, but I genuinely don't think that their vulnerability has as much to do with autism as he says it does. There are also much better ways of going about it than making harmful statements about a community in an article published by a national newspaper.

Doctor Who - An Autistic Specialty?

One of the things I've noticed since getting involved with the online autistic community is that a lot of us seem to share a common love of Doctor Who, so I wanted to have a look at what about the show appeals so much to us as a community.

I'll start off with my own thoughts and experiences first. I remember watching it when I was at primary school, so somewhere between the ages of 5 and 11. My mum borrowed some VHS videos (DVDs were nowhere near being a thing at the time) of some old series from somebody she knew when she used to run the after school play group and I specifically remember watching Tom Baker's Doctor. I think he stood out to me because of his eccentricity, his colourful scarf and, of course his love of jelly babies. I was also captivated by the eerie theme music and The Doctor's greatest nemesis the Daleks. I've always, always been fascinated by Daleks. When I was a kid there was a shop near where my grandparents used to live that had a life size Dalek model and whenever we went into the shop I used to stand staring at it for ages, or if we were just passing by on our way to see my grandparents I'd stare at it through the window where there was a clear view of it. I'm not sure what I love so much about Daleks other than the utter ridiculousness of what is essentially a mutant octopus in an armoured pepper pot being the most dangerous creature in the universe. I quite like the ridiculous, which is why I'm such a big wrestling fan. In terms of the show as a whole I like it for its monsters, the freedom that The Doctor has to go any time and anywhere, and the running theme of isolation. The Doctor has always flitted from companion to companion but ultimately ends up alone, which I find very relatable.

For a bit of research I asked around on Twitter a few weeks ago to find out what my fellow auties enjoy about Doctor Who. Leading on from the last point I made there seems to be a common theme of relating to The Doctor as an alien misfit doing his own thing while always trying to do good in the universe. Acceptance is another common theme in the replies I got. The Doctor is very accepting of all beings and always looks for the good in them, trying to help without encouraging violence - particularly guns. Georgia Harper (@MindTheFlap on Twitter and author of the blog Mind The Flap) is somebody in the autistic community who's more in the public eye and is open about her love of the show. For her it became an important social tool while she was at uni. She joined Oxford University's Doctor Who Society and enjoyed having the structure that it gave to socialising with other fans. This makes a lot of sense from an autistic point of view as we often prefer structures and routines in our lives where possible. From personal experience, I know that unexpected events in social situations especially can completely throw me off, leaving me in a struggle to work out what to do or say.

There are lots of different reasons to love Doctor Who whether you're autistic or not. There's so much variety in the show that most people are bound to find something throughout its 56 year history that they like. I wasn't keen on Peter Capaldi's first 2 series and almost stopped watching at that point, but I decided to give it 1 more series before I gave up on it completely and I'm glad I did. His 3rd and final series well and truly clawed the show back in my opinion. There has been some criticism of Jodie Whittaker's debut series as The Doctor. While I really enjoyed Jodie's portrayal of the first ever female incarnation of The Doctor I do agree that the writing of the series as a whole left something to be desired, which is frustrating considering how brilliant Rosa (episode 3) was. I really hope they pick it back up for the next series. Of course, when the show returned from its long hiatus in 2005 it was in a different and much more modern format. Pre-hiatus the show was dragged out a lot more with storylines that spanned entire series, whereas from 2005 onward each episode is its own separate story (with just the occasional "To be continued...") but at the same time each episode also fits into the overall story of the series, usually building up to a clash with that particular series' big bad.

Doctor Who is something I've been intensely interested in for as long as I can remember, but because of the timing of its hiatus/return I didn't really appreciate it as a story telling device until it came back in 2005. While it ran before its hiatus I was only really old enough to appreciate it in terms of "Ooh, there's a monster. He looks big and bad," or "That sonic screwdriver looks cool!" I commented on a Twitter thread recently about our favourite Doctors, and I had to say that for me Matt Smith is THE Doctor because I feel like I relate to him so much more than the others.

Autism Denial

Society's understanding of autism has a long way to go before we reach the ideal level of integration and acceptance that there should be. There are still lots of myths surrounding autism that are either untrue or only true for some autistics and not for others because of the wide variety of the autism spectrum. Some examples are that only kids can be autistic (not true - autistic kids grow into autistic adults), or that autistics can't hold down a job (true for some, but not for others depending on how exactly autism affects them and what comorbid conditions they have, if any).

Because of this lack of understanding there's a lot of confusion, sometimes even in autistics themselves. Society dictates that "normal" humans should be or do X, Y and Z, and the lack understanding dictates that if an autistic person has this trait or that trait that's how they should be all the time. But in reality autistic traits can be more obvious at some times than they are at others. Every now and then the online autism community will post something that demonstrates how one day they struggle with certain aspects of their autism and feel the very real effects that it can have, and then another day they'll have what the outside world would see as a "good" or "normal" day where their autistic traits don't have that much of an affect and they'll start to wonder if they really are autistic, whether they're over-reacting to a couple of their own habits and so on. This is what I mean by this post's title Autism Denial and it can be damaging.

I experienced something similar recently when I went to see a friend who I only see maybe once or twice a year these days. Because I'm quite isolated in my day to day life and the only real contact that I have most of the time is with my wife, kids and our immediate families I get very comfortable in being myself, acting how I want to act and un-masking. Yet when I went to see my friend I found myself wanting to talk to him about my autism diagnosis, but I was scared to. Part of me had visions in my head of a conversation between us going something like this:
"I'm autistic."
"No you're not."
"I was diagnosed before Christmas."
"You're not autistic though."
And another part of me was in denial thinking that it's not relevant to anything, it's just a few little quirks I've got and doesn't mean anything or affect anything. While it's true that it doesn't affect us in the sense that I've always been autistic and we've been friends since we were at school together (over 16 years), I do still feel the need to be more open about autism in face to face interactions and I feel that talking about it is good for both parties. In fact, I deliberately wore my "This is what autism looks like" hoodie in the hope that he would ask about it so I didn't have to make the first move on the subject. He didn't.

When we're having our "good" days it's common for us autistics to feel like we're faking our autism even though we're not at all. It's just that the external or visible effect that autism has on us on a day to day basis can change. For me personally in situations like when I saw my friend I sometimes find myself wondering whether the assessment got my diagnosis wrong, or whether I somehow presented to them falsely. But I know that all the traits and evidence are there - and more importantly they're real - so there's no way it could be wrong even though I do present as what some would call "high functioning". I guess it's probably part of the anxiety that plagues a lot of autistics like myself, in which case talking about it and taking steps to a more understanding and more accepting world are definitely the best way to go.

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!