Person First?

Recently, I saw a poll that was being run by a certain (so called) Autism charity which has a bit of a thing for the colour blue. They wanted to know whether to use person first language or not. For those of you who are not familiar with this idea, they want to refer to us as a Person with Autism as opposed to an Autistic person. This question of how we should define ourselves, and others, is a very complicated and divisive subject for all concerned. For those of us who have Autism, the question is even harder.

This is mainly because there is a fundamental argument over this. Do we say that someone is Autistic? Or that they have Autism? Generally speaking most of us on the spectrum prefer to be called ‘Autistic People’ or some variation of this. Whereas professionals, parents & caregivers seem to prefer the term ‘Person with Autism’.

However this debate within the Autistic community is a long way from finding an answer to the question of ‘whether or not to use person-first language’. It has become a minefield of political correctness, where one wrong word and you’re labelled as rude, insensitive, inappropriate or just plain ignorant. In my humble opinion, as someone on the spectrum, I prefer ‘identity-first’ language because my Autism is important to me. If something is truly a part of me and what I am, should it not follow that I use it to describe myself?

People use descriptors such as gender and race all the time and disability is no different. It’s not like I’m defined by this condition that needs to be separated from me. Autism, or any disability is not something we carry with us, like an accessory or our favourite hat. Rather, it makes up part of who we are. It’s an operating system, and to separate Autism from someone would make them a totally different person. Therefore, identity-first language is very important to me and many people within the Autistic community.

I can’t speak for everyone, though. The people on the spectrum who I’ve had conversations with about this, have agreed with me about identity-first language. It’s not taking away from the person in any way, shape or form – this type of language is an enhancer. After all, it’s rather obvious that human beings are people, and if one needs to be told that, it’s a whole different issue to begin with!

Stay Safe X

Overwhelming

Over the last few months, I’ve had an ongoing strange experience. I’ve started to receive messages from people who have followed me, read my posts and wanted to tell me how my words and thoughts have affected them personally, or a loved one of theirs who is on the Autism Spectrum. These comments have, so far, all been very positive, and I’m aware with the nature of the internet, this is not always the case.

These comments have really shocked me because I just happen to write about things I like or that I find funny. Sometimes I might share an autistic perspective on the events of my day. I started the website and social media feeds to advertise my poetry books, and occasionally to vent about autistic issues; that was all really.

It seems that people are finding what I post helpful and/or interesting and it’s blown me away to think that I’m having an effect on other people’s lives. I’m not entirely sure how to react to it. In one respect, I’m very happy to be raising issues faced by the ASD community and to be helping people. On the flip side, I’m very shy and socially awkward with compliments, and have no idea how to appropriately respond to the kind words people are saying to me. I’ve taken to asking Mrs Bob for help with this part as she always seems to know how to handle this kind of thing.

I would like to say thank-you so much to everyone who takes the time to read my online ramblings. You’re the ones that make this real and without you, I’d be just another voice shouting into the ether.

Your love, kindness and support is so much appreciated.

Stay Safe X

Living for the Weekend.

Well that has been a very busy few days! Eight back-to-back, in total, as a result of me trying to do a favour for another member of staff so they could sort out a few personal problems. I later discovered that this wasn’t the case, and I’ve learnt not to be so trusting of people now – even those I think of as “good friends”.

It was so busy, mainly because the weather has been on our side – it’s been extremely hot. The last two of the shifts were very long ones, in fact, the worst was the last one – by the end of it, I was hot, sweaty, and running out of glasses and supplies.

This last shift really took its toll on me. Not because of the fact it was a long shift or that we were incredibly busy. It was a combination of the constant wave of noise from things like background music and customers talking at me. Some of them were very rude about the time they’d had to wait, even though they could see that I was on my own and trying my hardest. Combined with the onslaught of questions and having to do the whole small talk thing, I just about reached my limit.

After all the stress and pressure of the shift, I joined the rest of my colleagues and started the mammoth task of clearing up, restocking the bar, etc. More importantly, though, I had a chance to catch both my breath and my thoughts. Then, after locking up, walking into the warm night air was wonderful as was driving out of the village and watching the lights disappear into the distance.

I was looking forward to a well-deserved two days off work to rest and recharge, ready for another busy week.

Stay Safe X

Middle Aged & Middle Class

After a very long 8 days at work, it was nice to get a couple of days to myself to do the things I like to do with my wife during down-time.

Firstly, contrary to popular belief, I don’t do the whole laying in bed thing, mainly because my furry alarm clock, Dog, went off in the small hours and he doesn’t have a snooze button. Also, I don’t like ‘wasting’ my day off and as I have a back problem and laying in bed can aggravate it.

You probably won’t be surprised to learn that I have a routine on my days off. Coffee is the first thing I make, for Mrs Bob and me. We might catch up on our ever-growing Netflix/Amazon watch list and try making a dent in it before going out to the tip, car wash, etc – doing any jobs I’ve put off during the week. Then I usually settle into my favourite chair with a soda and a good (in my opinion) movie. This week’s choice was “Ready Player One!” which even Mrs Bob enjoyed. After this, we decided to do what most middle-aged people do on a Saturday (and something I never thought I’d do after working in one), and visit the local garden centre to get supplies for Mrs Bob’s beloved shrubs. I get a strange enjoyment from doing this… which is a bit disconcerting.

Chilling out after that meant that the next time we ventured out was the following day, to sit by the River Dart to try to cool down. It made me realise that I can drive a nice car, own all the hippest clothes and dress like a 20-year-old frat boy, but I can’t escape the fact that I’ve become quite middle class and middle-aged without even realising it.

Not that I’m complaining. I’ve had a wonderful, relaxing, chilled weekend with a wonderful woman.

Stay Safe X

Overload

Recently, it’s become clear to me that I can’t tell when things are stressing me out or bothering me. I thought I could, now, but I have been proved wrong. This may seem very strange or ridiculous to you… “Of course you know when you’re stressed or something is upsetting you!” I hear you cry.

The thing is, that for a neurotypical person it’s apparently pretty easy to understand and process such thoughts and feelings and to tell when you’re feeling stressed out. For someone on the spectrum, however, this can be a very difficult thing to do. Those of us with autism spectrum disorders (ASDs) are also known to have problems in the processing of emotional information. This is contrary to the popular myth that those of us on the autism spectrum have no emotions. We do – very intense ones, which can be incredibly hard to cope with.

A massive meltdown hit me completely out of the blue the other day. I should have noticed the warning signs myself, like the fact that I was only getting a few hours sleep, I was getting quite irritable at times, my eating was erratic, etc. Mrs Bob noticed and flagged it up to me, saying that this was being caused by a stressful work environment. This was true – I was going through some major stress in the workplace, but I dismissed her concerns because I was under the impression that I had it handled.

Boy, was I wrong…

If you’re unsure what I mean by a meltdown it’s “An intense response to any overwhelming situation. It happens when someone becomes completely overwhelmed by their current situation and temporarily loses behavioural control.  This loss of control can be expressed verbally (eg shouting, screaming, crying), physically (eg kicking, lashing out, biting) or in a combination of ways.

I haven’t had a meltdown in a couple of years, and they are most often caused by stress at work. This one I had recently was a more stereotypical autistic meltdown than any I’ve had and it was worrying for Mrs Bob to watch. I realise that you may find it hard to understand a grown man losing control like this. Some may even say it’s just a temper-tantrum of sorts, but I would like to assert so strongly that a meltdown is NOT the same as a temper-tantrum. It is not bad behaviour and should never be considered as such. When an autistic person is completely overwhelmed, and their condition means it is difficult to express that in appropriate way, it is understandable that the end result is a meltdown. For me, it was a wake-up call.

Meltdowns are not the only way a person on the autism spectrum may express feeling overwhelmed.  Other behaviours that may appear are less explosive but are equally common, such as refusing to interact, withdrawing from situations they find challenging, or avoiding them altogether.

Fortunately for me, I could trace the cause of my meltdown to being anxious about work and the situation there, and I have a wife who could spot the signs and was there for me when I needed her. Not all people with ASD have that support, which makes it even harder. With its unwritten rules and unpredictable nature, the world can be an extremely challenging environment for autistic people and many experience anxiety on a daily basis. If a person does not have the tools or help to calm down when they become anxious or the perceived anxiety becomes too great, they may have a meltdown. 

What to do if someone has a meltdown. (Taken from the National Autistic Society U.K.)

If someone is having a meltdown, or not responding to you, don’t judge them. It can make a world of difference to someone on the autism spectrum and their carers. 

  • – Give them some time – it can take a while to recover from an information or sensory overload. 
  • – Calmly ask them (or their parent or friend) if they’re OK, but bear in mind they’ll need more time to respond than you might expect. 
  • – Make space – try to create a quiet, safe space as best you can. Ask people to move along and not to stare. Turn off loud music and turn down bright lights – whatever you can think of to reduce the information overload.
  • Thank you for reading and hopefully this will be of some help to you. If I have widened one person’s understanding of autistic meltdowns today, I’ll be happy. Please don’t judge.

    Stay Safe X