Posted by Shanti Roy on March 7, 2011
Disliking change is one of the most common symptoms in autism. Anyone who has a vague idea of what autism is will know that the autistic person often has a routine, does repetitive movements and is greatly distressed if they are not allowed to follow these little rituals.
I have talked about change before but I really wanted to elaborate on it because it still remains to this day to be my most debilitating symptom. I can learn non-verbal cues and remember them for at least a day, I can block out sensory stimuli, I can learn what is appropriate and what is not appropriate to say and I can even learn self help skills appropriate for my age but there’s no escaping the various levels of distress that I experience when change happens. I’m high functioning now so change for me is different from other people with autism. As a child I would scream and cry or put up a fuss about any slight change. My mother’s favourite one would be that I cried every time when the family went out and cried when we had to leave from that place that I eventually adjusted to so much that I didn’t want to leave.
Not all change will result in a meltdown or shutdown, it’s on a sliding scale, or spectrum if you will from mild to severe, but I also place them into groups of ‘controlled’, ‘uncontrolled, ‘sudden’, ‘gradual’ and even consider the environments one is in that drastically escalate the distress of experiencing change. And like most things the stress levels can be raised by certain moods and illnesses.
I’ll start off with mild change in the home or what I call a ‘familiar environment.’ The house is the most familiar environment because, well, they live there. Sometimes it can be a stressful place, depending on what living at home is like. But for me it’s the most comfortable place in the world. Mild change for me happens when I go to switch between tasks. I’m a very organised person and get through my day by doing a lot of tasks that are written down and need to be ticked off in a list. They involve house chores, reminders to shower, when my favourite TV shows are on, reminders to eat and even do things I enjoy like reading or drawing. It’s still hard for me to switch between these tasks. I might find myself doing something just a bit too enjoyable and get stuck on it. The act of switching leaves me with a little discomfort; a feeling of ‘well what am I supposed to do now’ to literally pacing around with a blank mind with no idea of what to do next.
The next level of change is when someone wants to take me away from my special interest pre-maturely. It’s not their fault and I’m not mad at them even if my little rhinoceros huffs under my breath say otherwise. My special interests are very important to me. I can even be quoted by saying ‘they are the only things that matter to me in life’ and it does certainly seem that way. I may get into a different interest every three or so months or maybe every year but at that moment that interest is all I am thinking and caring about. So when I’m taken away from this one true love for even a few seconds I can become a bit irritable.
The next level is sudden change in the home. This could be anything from going to eat something and finding we’ve run out, or being rushed to go out, or having unexpected visitors or even wanting to wear something and find out it’s in the wash. I panic a lot when I go to eat or grab something and find out it’s not there. It takes me a few moments to calm myself down. We’ve now entered into panic and a substantial amount of irritability mode because of this, what I dub ‘uncontrolled change.’ I had no control over the situation and the end result is usually a brief panic episode or a feeling of wanting to lock myself in a room far away until everything just fixes itself. But these things never just fix themselves. And because my shift in mood is so abrupt and maybe even in the form of kicking a few chairs or snapping at people the receiving end will not look upon this muttering moody brooder sympathetically. And if a violent meltdown is present where I share my expanded vocabulary of every profanity in the English language, a compulsion to blame inanimate objects and unpredictable weather patterns on my outbursts, well, I’m the one who gets yelled at for overreacting.
Many of my meltdowns are triggered by the rain. It seems a silly thing that something so common could completely throw me off a routine. But the rain makes a whole lot of difference to someone with autism. It could mean a quick walk into town is postponed, or those clothes that I wanted to wear on a certain day couldn’t be worn, or even that a delayed train would make me late and miss out on something very important to me. And if it storms that further throws me off my routine. That could mean the satellite is out so I miss my favourite programs. It means that I have to turn my computer off and I’m not left with many other options. I’ve just got free to air TV channels, books to read and a bunch of wet cats that ran inside too late to be safe from the storm.
The next two levels up involve leaving that familiar environment and dealing with both controlled and uncontrolled change. Controlled change could be something as small as changing my mind and there’s not much stress. There is some that is greater than when I’m not at home but it’s not enough to start the chain reaction leading up to a meltdown. Ahh, but uncontrolled change is a whole new tier of distress and it has to be broken up further into ‘gradual’, ‘sudden’ and ‘clusters.’
Gradual change is when I mentally or even vocally try to get through the steps of what I have to do to cope with this in order for me to calm down. It’s a way of understanding that there is nothing I can do to go back and I just have to accept it. Sudden change can be anything from sudden panic, to a pressure in my head (a bad kind – you know when you feel jealous or embarrassed – like that but you may feel like hitting someone) to a sudden outburst. Cluster change is when just a few too many things begin to go wrong when trying to adjust to change and eventually the slightest rain drop could send you into a murderous rage, but you desperately hope it does not come to that. Usually this is accompanied by a shutdown, which is kind of like dissociating with the world and not being able to move or speak, or even feeling depressed and not having the energy to do anything. This latter shutdown might not occur until a day or more after the event that caused so much distress.
Change in an uncontrolled environment can lead to a panic attack, in fact usually when I get lost or am racing against the clock in the city I will probably have a panic attack. The worst of my meltdowns happen when sudden change happens in an uncontrolled environment, usually with a lot of sensory stimuli and growing feelings of stress and anxiety. And it can sometimes last for days. These are sort of internal meltdowns which happen because having an outburst in the city is not always tolerated and that will eventually turn into a shutdown where I appear to become much more autistic. I get told a lot that when I come back from the city I’m in a bad mood. Well, I have to disrupt my routine, go away from the safest environment, leave behind my special interests, be exposed to many sights and sounds and smells which are all overwhelming and I have to go through so much stress and not show it because people are usually not that overcome by these things, and then I have to communicate with people that I don’t even share the same neurology with. So excuse me if I’m a bit irritable when I get home.
This is just a simple scale of change for me. It can be very mixed up. Usually the stress of so much change accumulates over time and the actual trigger for the meltdown had nothing to do with it, and other times the trigger brought on a sudden meltdown. There are also things I won’t do like go on holidays or travel overseas. Even thinking about one day working a job or living on my own is scary because that is something that won’t only disrupt a routine but bring it to an all time halt. It has to happen one day, I know it, but I still really don’t like change. I should add that this is not just something that happens a few times a week. This happens every time I need to shift my attention or do a new task, every time I leave the house or have to communicate with another person. That is pretty much an everyday occurrence for me. The more long lasting distress from change could happen a few times a week, depending on how much I allow myself to be exposed to it.