April 2019 – My Adult Autism Adventure

Yet another tale of depression

This is my personal story of depression and how it’s impacted my life.

This is primarily a blog about adult autism, but the crossover with depression is a pretty common one. Are all autistic people depressed? Absolutely not. Are all depression sufferers autistic? Of course they aren’t. But there is often a strong correlation, so here’s a look at my ongoing issues with depression…

It’s not easy to write something original about personal experiences of depression. As I’ve alluded to before, it seems like 90% of Z list celebrities have ‘opened up’ to a newspaper or magazine. I’m just going to tell it like it is for me. This is my personal experience of depression and how it’s impacted my life…

We all have low spells, times when we think the whole world is against us and days when we don’t want to do anything. I had plenty of those in childhood and the early years of my adult life, but as with some of the autistic symptoms I displayed, I just dismissed this as ‘me being me’ and it was my normal.

The problem is that as you get older, responsibilities increase. Bills, maintaining a home, having a career et al are all constant issues and cannot be forgotten with a quick tantrum or a day in bed. That is often (and is in my case) when depression comes to the surface.

So how does ‘falling apart’ manifest?

Coping with important stuff has never been my forte, especially when there’s a roadblock. Failing a job interview or not even reaching interview stage is something that I find almost impossible to deal with. I feel worthless, unwanted, stupid and a failure. Putting things into context is really tough for me, I take things personally and literally when it’s not appropriate. It’s part of my neurodiversity – the inability to think normally and practically. My brain has a set way of thinking and that sometimes causes problems.

I struggle when I make mistakes in everyday life. Like really small stuff – forgetting to put the washing machine on, getting into the wrong gear when driving or anytime I forget something. My self-regard goes through the floor and I feel really useless and upset. This is something that has been a lot worse in recent years due to the aforementioned increase in responsibility that comes with adult life and fatherhood. I need everything to go smoothly and when it doesn’t, I fall apart and my self-worth evaporates.

Generally speaking I can still function to an extent. I’ve only ever had two spells of depression that have stopped me going to work (whether I should have had more is debateable!), and only one that was more than a couple of weeks.

I’m pretty good at ‘masking’, so can put on an act for work and small talk, which at least creates the illusion that I’m relatively ok. I don’t turn to alcohol, binge eating or drugs. I’m not abusive or violent, and I don’t cry very often. That’s the good news.

Pause for thought

I used to do marketing work for a counsellor. She did a lot of corporate presentations and would always use the following analogy to explain stress.

We all carry a metaphorical stress bucket around with us. In the bucket we have screwed up bits of paper on which we write the things that cause us stress. So standard stuff like bills, relationships, your terrible football team et al will be in everyone’s bucket. Having a few issues to stress us is good, keeping them bouncing around in the bucket is perfectly healthy.

The problem is that sometimes you can have too many pieces of paper in your bucket and the bucket overflows. And that’s when people get ill through stress. Plus, we’re all different, ergo we all have different sized buckets, some overflow more easily than others.

When the bucket overflows we breakdown. Too much stress leads to anxiety and depressions. That then leads nicely into a talk about resilience training and how you can help minimise the risk of your bucket overflowing

Writing these blog posts has caused me to revisit this concept and it’s made me realise that there’s another major issue that causes the bucket to overflow. Being neurodiverse often means that one stress can open up many other stresses. For example – I worry about bills, that leads me to worry about money, that leads me to worry that I don’t earn enough, that leads me to worry about my career choices, that leads me to worry that I’m wasting my life and so on. Basically, I’m printing out stresses and there’s no pause button!

The net result is that the bucket is constantly overflowing, and that equals long term depression and anxiety.

Back in the room

The bad news is that I’m completely energy-less, devoid of any enthusiasm, I can’t concentrate, I struggle to muster any interest in anything aside from just sitting on my own, I can’t see anything to be positive about, I’m terrible company (insert joke here) and I’m very easily aggravated. The end result is that I just feel extremely sad.

You see, my brain just refuses to switch off or forget about negative things, no matter how minor they are. Everything plays on my mind. Sometimes a fun conversation, a good tv programme, playing with my daughter or playing/watching sport can lessen the issue for a bit. Sometimes I just want to spend a chunk of time on my own. But it’s very much a case of a short term cover up.

It’s a negative spiral – my brain causes me to overthink, thus making me think negatively and become anxious, thus making me feel worthless, thus making it harder to think positively. Repeat repeat repeat. It’s not a huge amount of fun, and a lot of the time there’s no way out. You just end up going round in circles and feeling low for days on end.

A mantra I often say both to myself and people close to me is that I just want everything to be simple. No complications or hassle and I can function ok. I don’t mean that I want a boring life, far from it. Just one that I can manage with no complications. Then I can get through life. Of course, life isn’t that simple and it’s impossible to make it so.

I take medication and have regularly counselling sessions. I think they help, but it’s impossible to really know. There’s no visible healing, so I’ve no idea how I’d be feeling if I stopped going to counselling or taking tablets. The whole process of getting an autism diagnosis will hopefully help me get the correct medication and assistance going forward.

How can you help?

This is something I’ve had a few people ask me. It’s difficult. The big thing that depression sufferers struggle to convey is just how bad they feel. There’s no bandage, cough or physical scar to show off your illness. Most of the time it’s invisible, and despite awareness being better than it’s ever been, mental illnesses still don’t get regarded in the same way as physical ones.

If you’ve never had depression or extreme anxiety then it’s pretty impossible to fully understand how it feels. All I can say, aside from the above, is that it’s the worst feeling I’ve ever experienced and not one I’d wish on anyone.

This post, as well as my others, is trying to help people understand what it’s like, so I guess the best way you can help is to read this blog! Which sounds like a cheap plug, but honestly reading this can be a great help. As can sharing it and trying to bring it to a wider audience.

So when you see somebody at work or at home behaving out of character or being quiet or perhaps lacking patience, you can understand that it might be a consequence of their mental health.

I could write hoards more on this topic, and maybe at some point I will. But for now this can serve as an overview, not an especially cheery one but there you go. It’s an important part of my life and hopefully adds a lot of value to the blog.

Thanks for reading, and you’ll be pleased to know that after that rather heavy post, next time I’ll be lowering the tone somewhat by writing about the 2010 World Cup!

Dermatillomania or why I can’t stop biting my fingers

How do I stimulate myself?

Have you got an annoying habit? I’m guessing the answer is yes. You might bite your nails, have a twitch, flick your hair, tap your feet or talk when you eat. Most people have some form of repetitive motion they do. It might be for comfort or to alleviate anxiety. If you do anything like that, then congratulations, you’ve stimmed! Welcome to the club.

Stimming is short for ‘self-stimulating behaviour’ and refers to any action you might do provide physical or emotional input to yourself. People do it to distress and relax.

The good news is that the vast majority of stimming activity you do is socially acceptable and perfectly harmless. Sure it can be annoying, but it’s not going to cause relationship breakdowns or lose of employment.

Stimming is often strongly associated with autistic people, both children and adults. It provides comfort by working the senses and is done in response to emotions such as boredom, stress, anxiety, fear and even excitement. There are scores of different ways to stim. Some people need to smell something, some need to taste something, whilst some, like me, need to touch something. Plus of course there are other senses available!

Because of autistic people’s neurodiversity, these emotions are often exacerbated and more intense than ‘normal people’ experience. You’ve probably got the physical and cognitive abilities to keep your stimming under control, but that’s often not the case for autistic people.

In a lot of cases, autistic people stim to a level that isn’t under control or deemed acceptable. Rocking constantly back and forth, head banging, pacing etc, are all stims that can cause issues in public, but it’s something that’s necessary for a lot of people.

I’ve been stimming for over 30 years but only recently realised it! Whilst my stimming doesn’t quite fall into the ‘completely unacceptable’ category, it does cause a few issues….mainly to myself! You see I suffer from dermatillomania. I better explain…

I bite my nails. That’s not uncommon. I also bite the skin around my fingers aka dermatillomania. Less common but not that unusual. Where I differ from ‘normal people’ is the severity and regularity with which I do it. Barely an hour goes by that does not involve me picking at the skin below or above my nails, or on the tips of my fingers. My fingers are, for want of a better phrase, an absolute fucking mess. I often draw blood – which can be a bit embarrassing if it’s in public, and worst of all it seriously hurts when I manage to pick off a particularly large piece. All of which makes me sound a bit Lecteresque, but I’m happy to report that I have no culinary penchant for human flesh.

Throughout life, parents, friends, girlfriends have regularly, and quite rightly, told me to stop. Both for my own benefit and because it annoys them. But now, I’m seeing that I’ve been doing it because I need to stimulate myself (stop laughing, you’re not a teenager! Unless you are a teenager…in which case laugh away) and that need is too great to control.

So should I carry on picking my fingers?

On the one hand (and that’s as good a joke as you’ll get on this blog!), it makes sense to carry on as it helps my anxiety. It’s annoying but it’s not social unacceptable.

BUT, I am open to finding a less annoying ‘stim’ to satisfying my need for stimulation. I find that if plasticine or putty is nearby, then I roll it around in my hand and squeeze it for long periods, so maybe a stress ball or similar would satisfy my need.

There are companies dedicated to supplying ‘stimming toys’ such as chewable jewellery, scented toys and the aforementioned stress balls. All designed to satisfy the need to engage the senses. Disappointingly, none of them are called ‘Stimming World’, so if there are any stim toy inventors out there looking for an hilarious pun name, I’m happy for you to use in exchange for a small fee.

I’ve spent plenty of time looking at the various options, and come to the conclusion that whilst my habit is occasionally annoying and occasionally antisocial, I’ve been doing it for 30 years and it’s not caused any major issues. Plus, now I’ve ‘come out’, I hope people will understand why I do it and not think negatively. It’s just another autistic trait I display.

Carry on blogging?

A short post just to thank everyone for reading so far, plus a brief look at what I’m going to be written about next…

The most important thing to say in this post is a huge thank you. I’ve appreciated all the messages and support. It’s a pretty testing time at the minute and getting this off my chest has been a great help. So whether you’re a friend, colleague, family member or somebody I’ve not spoken to since the last millenium, thank you.

So far, I’ve written a pretty candid and personal account of my experiences of adult autism. In all honesty, it’s felt a bit necessary but directionless, like a big brain dump. I’ve had a decent amount of views (over 1,000 in fact), some lovely, positive feedback and I’ve really enjoyed writing it, so I want to carry it on for the foreseeable.

I blog as part of my day job and I’m always looking for angles that will enable me to write a series of blogs. So if I’m struggling for ideas, I’ve got a few things ‘in the bank’ that I can write about. I also think it helps attract new readers by giving the blog an identity, and keeps existing readers coming back for more.

There are plenty of excellent blogs and vlogs by autistic adults out there, and the vast majority are aimed at fellow autistic people. And that’s great, it’s fantastic to discover that other people are in the same boat as you and the mutual help that goes on is great. Plus, getting those thoughts in writing acts as an important therapy for some people, myself included.

But I don’t really want this blog to just go in that direction. Instead, I want to aim for the people who don’t know what it’s like to be autistic…yes I’m talking about (de de der…) non autistic people!

Why should you care?

Yes you, you so-called neurotypical people account for 99% of the population. Which is clearly a pretty hefty percentage, but flip it round and if you think that 1 in 100 people have autism, suddenly autism doesn’t sound like a particularly rare condition.

Most people will know (knowingly or not) at least one autistic person. Be that a friend, a work colleague, someone they play sport with, a neighbour or whatever else. Indeed, plenty of people will know multiple autistic people. But there’s a pretty high chance that you won’t really know much about the condition. After all, why would you? I certainly didn’t before I realised that I probably had it!

By knowing more about autism, it can help you know what to do around autistic people and understand their behaviour and differences. Although, as always, it comes with the caveat – all autistic people are different.

It’s also a really interesting subject. I’m still getting to grips with many elements of it. I’m learning new terms like stimming, masking and various new acronyms. I’m discovering that I’ve been doing things all my life that have indicated that I’m autistic. There are also plenty of things I don’t do that many autistic people do.

So, whilst I’ll still be providing updates on my progress through the whole diagnosis process and what’s happening with my life (well, the bits that are blog relevant!), I’ll be exploring different traits, behaviours and terminology relating to autism and specifically adult autism. All aimed at improving both mine and your understanding of the subject.

And what better place to start than the age-old question of what do I do to stimulate myself?

As ever, I’d be grateful to anyone who shares, retweets, tells their friends or whatever else this blog. You can also subscribe by clicking the button on the right.