I had yet another meltdown today.

One of the junior testers at work had set the status of a work item I had completed to “Failed Testing”.

Thing is, he’d not actually tested it, as there was another issue that prevented him from testing it.

Maybe it’s just me, but wouldn’t you just keep the status as “Ready For Test”, rather than “Failed Testing”? How can it have failed testing, if you’ve not tested it?

So I asked the tester that.

Today my team lead took me to one side and told me that the tester had gone off sick, as a result of my comment.

This caused me to meltdown. I ended up putting a dent in the plasterboard in the meeting room with my forehead. I’d done nothing wrong. How could I be to blame for anything for questioning how something that hasn’t been tested was set to “Failed Testing”?

I ended up going home, drained.

When I first took the Autism Spectrum Quotient (AQ) test, back on New Year’s Eve 2012, I scored 43 out of 50.

Since getting my “official” diagnosis, I have researched the ass out of autism, and put in coping mechanisms now that I know how my autism impacts upon my behaviours.

I just took the AQ test again, and this time around I scored just 28!

0 – 10 = low
11 – 22 = average
23 – 31 = above average
32 – 50 = very high (most people with Asperger Syndrome or high-functioning autism score about 35)
50 is maximum

An important aspect of social relationships is the ability to empathise with the feelings of others. Empathy is a two-dimensional emotion. It has a cognitive component (theory of mind, or mindreading) and an affective component (emotional processing) which allows us to share the feelings of others.

When engaged in affective empathy, we vicariously experience the emotional states of others, understanding that our feelings are not ours but rather those of the other individual.

Lack of empathy and/or sympathy have long been thought of as a universal trait of autism, but recent research seems to indicate that this varies among individuals. Certainly I do not think that I have ever truly empathised with anyone.

I never felt any empathy for my mum when she was terminally ill. I’ve never felt it for a partner, and I don’t feel it for my daughter, friends and colleagues. Nobody. It sounds very cold to say this, but this is my reality.

But…

I made a new friend last year and for over 10 months I was really confused about the very strong feelings I had towards her, because I had never experienced such emotion before. The feelings I had were so strong that it was painful sometimes, palpable.

So what is different about her? Well for one, she lives hundreds of mile away, so we communicate by text and voice clip. Boy can she talk. When we’re on a roll we can do hundreds of messages a day. She’s very expressive, exceptionally funny, has a way with words and has the most amazing lilting voice; her accent melts me. We can and will talk about anything and everything.

She’s not had the easiest of times but she talks very openly about her life, and I really feel when she does. When I say “feel”, it’s as though what happened to her is happening to me. It’s a physiological response. I just want to hug her which is so alien to me. I hug my friends when greeting them and saying goodbye, because I know you’re supposed to, but it’s different with her. I feel emotion as though I’m experiencing what she experienced.

So what is it about her that is different?

I honestly don’t know. Maybe it’s because we communicate digitally. There is no body language or facial expression to confuse me. I can re-read and listen again to voice clips until I understand what is being said, which is so hard to do in real time. Plus she can’t see my facial expression, which was always something that Maria picked up on, misinterpreted, and got angry about.

I really don’t know.

I actually like it. I am loving feeling.

So what do the experts say ?

A lack of expressed sympathy or empathy may not be the result of a lack of emotion in someone who has autism, but rather due to underdeveloped skills.

To connect with another person one must:

  • Recognize the other person’s feelings
  • Understand the other person’s hopes, dreams, and/or expectations
  • Have the emotional experience to relate personally to another’s feelings
  • Have the tools to physically and verbally express empathic feelings

Research shows people with autism may struggle with cognitive empathy because they are unable to recognize and name emotions based on facial expressions.

The ability to name emotions is an important step toward experiencing empathy and sympathy. Alexithymia is characterized by difficulties in identifying, describing, and processing one’s own feelings, often marked by a lack of understanding of the feelings of others, and difficulty distinguishing between feelings and the bodily sensations of emotional arousal. Being able to identify and label emotions is key to recognizing those emotions in others.

While cognitive empathy can be lower in people with autism, affective empathy, which is based on instincts and involuntary responses to the emotions of others, can be strong and overwhelming. Newer research suggests that some people with autism may actually feel other people’s emotions more intensely. This is definitely what I am experiencing.

I had a meltdown exactly one week ago and I’ve been in shutdown ever since.

During my shutdown

  • I’m not aware that I am in shutdown at the starting stage. I just feel confused and off-balance. I can do nothing but be. I have no energy or capacity to think to help myself, or anyone else. I’m like a hung PC displaying the hour glass. I’m non-responsive, unaware of my environment, lost somewhere.
  • I can’t think properly and form complete thoughts.
  • I spend the time alone and in isolation. Even though I’m surrounded by work colleagues, and have lots of virtual friends, I just cannot interact with them because I am lost in 1000 incomplete thoughts.
  • I lack energy to do much. I get home from work and just put the TV on. I don’t have the mental capacity to interact with anyone or anything. I just wait for bedtime.
  • If I do interact then what I say makes no sense.
  • I feel that all that I am able to do is breathe.

Shutdown leading into mini-meltdown

Being in shutdown can lead to further, more minor meltdowns

  • When in a shutdown I experience an implosion of thoughts. My brain doing what it does best tries to solve the problems in my life; only they are problems that it cannot readily identify.
  • During this phase I turn my anger in on myself and use words like what was I thinking, I can’t stand this, I won’t ever do this again, I am done with that. I beat myself up basically for the mistakes that I’ve made.
  • I convince myself that I will turn over a new leaf, make life altering decisions. This usually means wanting to destroy an aspect of self and the way that I do things. I long to become stronger, tougher, even if it goes against my core values. I think that if I’m harder, rude, angry then I will be able to stand up to others.
  • I analyze over and over my shortcomings and frailties, both real and imagined.
  • I make extreme decisions: I am never going on Facebook again; I am never going to ask her for help again; I am never reading about ASD again. I incorporate the word again into self-talk as a means of self-punishing for past decisions and actions.
  • I criticise my past behaviours: I cannot believe I ever thought that way or acted that way.; I shouldn’t be this way: What is wrong with me?
  • I over exaggerate the dire state of my current relationships and self-blame. Everything is somehow my fault. I should have known better. What is wrong with me to think that they ever cared, to have ever trusted, to have ever believed?
  • I wallow in self pity and hate myself for wallowing in self pity again.

The shutdown after a meltdown usually lasts for a couple of days, but it’s been 7 days now. Events of the week have kept me in this state because my anxiety and stress levels have been pushed through the roof.

My car broke down 250 miles from home and it took 9 hours to recover back home. The hire car is a nice car, it’s a Mercedes, but it’s basic. My own car has Android Auto, which means that I have a cracking Nav system, and Google Play music.

The Merc has none of this. It doesn’t have the adaptive cruise control that I am used to, has just the one automatic gearbox so the gear changes are jarring, and doesn’t have automatic wipers. The gear selector is where the wiper stalk is on the Passat, so I ended up putting the car into neutral at 70mph thinking I was operating the wipers. You even have to use a key to start the car!!!

So the lack of my usual driving aids is causing distress. I get my own car back today.

Yesterday was the 18th anniversary of my mums death. I’m never in the best frame of mind around this time.

The solicitors dealing with my remortgage which will remove my ex from the mortgage have screwed up. The mortgage offer expires in 8 days, so I contacted them last week to see when it will complete. They told me that they are waiting on documents from the ex. I know that she sent them 6 weeks ago. It’s beyond me why they didn’t contact me to let me know. She’s on holiday and won’t be back in time to get another copy of the documents off. This process started in January!!

So I now have to start the remortgage all over again, which means taking time out of work, which I stress at asking for. It also means that the ex doesn’t get the money she’s expecting for a while longer, which means she’s not going to be happy with me.

Over the past two weeks I’ve screwed up what had the potential to be one of the best friendships of my life. Each time I try to make amends I seem to make things worse, largely because of my mental state right now. This is really upsetting because she is one of the most wonderful people that I have ever met.

I’m also on call again this week, the second week in three. It’s always stressful. The constant fear of being called when you know you need to get a good night’s sleep. Lack of sleep is always a big influencer on my meltdowns/shutdowns/fuckups. I have bad sleep hygiene as it is, so when I’m already in sleep deprivation being on call really stresses me, which means I get even less sleep.

My uncle was involved in a road traffic accident last week. Because of all the facial reconstruction he has had due to cancer he cannot be understood over the phone, so I’ve had to deal with his claim for him. I hate dealing with call centres, it really raises the anxiety levels.

Because I can’t call in on my uncle until after work, I end up travelling in the peak rush hour traffic, which is bad at the best of times, but when in a hire car that is lacking in all my creature comforts, the stress really starts to pile on.

There aren’t too many differences between meltdowns and shutdowns. Both are extreme reactions to everyday stimuli, often the result of long term unresolved issues and are completely out of the control of the aspie.

I personally tend to be more predisposed to shutdowns than meltdowns.

What is a Shutdown?

A shutdown is almost the polar opposite of a meltdown. Whilst a meltdown could be described as a rage against a situation, the shutdown is more of a retreat.

As with a meltdown the aspie may act irrationally or dangerously, but unlike a meltdown the harmful actions are directed at oneself. They may be more likely to take reckless risks such as driving faster or stepping out in front of traffic. There may be attempts at self harm or even suicidal thoughts. Simply put, you don’t care about yourself, whether you live or you die.

Behaviours which come to the fore during a shutdown tend to be ones of trying to hide away from the world. Rolling up into the foetal position, crawling under things or lying face down. Gaze avoidance tends to increase and conversation is non-existent. I’ve had shutdowns at work induced by making a stupid mistake, where I will just stare at my monitor for hours, rocking, being oblivious to what is going on around me.

Causes

In common with the meltdown, the cause of the shutdown tends to be cumulative, and isn’t down to just one event. The final “trigger” may bear no relation to the actual problem.

The final trigger could be something small such as an insignificant incident at work that provokes a long term insecurity, or the result of an extreme event such as a loss of a relationship, or redundancy.

Typically the problems associated with shutdowns tend to lean towards low self esteem and depression.

I can quickly get into a shutdown if I end up in a futile conversation, when the discussion begins to feel like I’m stuck in a never-ending labyrinth where the other party is telling me that I have done or thought something that I really have not, accusing me of lying or not knowing my own mind when it is they who have misinterpreted me because they are used to dealing with Neurotypicals.

What it Feels Like

For me the pain of all the current issues in my life, both the one that triggered the shutdown and those that were part of the cumulative, comes to the fore.

I start to make mountains out of molehills, catastrophising. I’ll start thinking “what if”, “if only”, “could have”, “should have”, which is counterproductive because you can’t change the past, and you start to beat yourself up over the stupid mistakes that you’ve made.

I’ll play events over and over again in my head, in high def colour video with dolby surround sound audio, picture perfect. I’ll cross reference things said and done with previous comments and catastrophise the shit out of the situation.

I become incapable of functioning outside of those things that are essential, such as doing my job. I’ll get home from work and collapse into bed rolled up in the foetal position, or sit in the lounge staring into space, rocking to the beat of my heart. I’ll skip meals, or eat junk. I’ll perform the just the basics to maintain my personal wellbeing. I’m on autopilot.

I feel unfulfilled, lacking in motivation.

This is the worst time for me to communicate with the outside world, as my cognitive abilities are shot to pieces. This is the time when I will be most abrupt and blunt, and if I communicate I will often make things worse. I don’t think straight, and I’ll piss off the people that I need in my life the most.

So I will often ignore phone calls and messages, which pisses people off further, but they don’t understand that I just don’t have the ability to respond. This isn’t a cry for help, a game. This is pure on spiralling out of control into the abyss.

I really just want to be left alone, for the world to stop long enough for me to sort out my thoughts. I feel so alone and isolated, yet paradoxically I want to reach out to people, wanting them to understand me and to make allowances for my responses to situations that they are involved in with me.

I want to cry from the frustration but can’t.

Sometimes, depending on the level of pain I’m feeling, and how much my world is spiralling out of control I can quickly get to a very dark place thinking what’s the point of it all. I’m not the suicidal kind, I’m a coward and could never take my own life, but I do start to wish for a natural death; I want to go to sleep and not wake, or have a heart attack.

I am exhausted from living, but I want to live. I want to get better. I want to regain energy.

A shutdown usually lasts a couple of days for me, and like a meltdown it is so draining that the cumulative effects are felt for days after, the meltdown hangover! On coming out of the shutdown, as with the meltdown I tend to feel stupid and can’t look the world in the eye.

“Dealing” with it

Often when in shutdown I will just get in my car and drive. And drive. And drive. It’s my escape from the world. I’ll put my music on, divert my phone to voicemail, and just drive, often with no destination in mind. I just want to escape the normality of my life.

A few years ago I had a massive argument with my partner. She told me she was leaving and went back to her mums on the Saturday morning. I went into a shutdown, got into my car and drove the entirety of the Welsh coast over two days, sleeping in my car overnight. I didn’t take my phone charger and the phone soon died.

When I got home she’d “come back” and she was going out of her mind with worry as she’d not been able to contact me. She’d called my friends, family and the police as she was sick with worry. Because she had “left” me it never occured to me that she might actually care.

This is the reality of shutting off during the shutdown.