This post on autism and change is written by Emma Fox. Find out more about Emma on our About page.
In this post I will be discussing why autistic people find change difficult, including my experience and things that can impact on my ability to cope with change.
Firstly, what do I mean by change?
Change can refer to a number of different things:
- A change to daily routines, for example if an appointment is cancelled or there is a diversion to a usual transport route
- A change to the environment, such as items being rearranged in a room or the presence of an unknown person
- Big life events such as moving house or a bereavement
- Transitioning between places or activities
Fundamental to diagnosis
Difficulties with change are actually central to receiving an autism diagnosis. The diagnostic criteria for Autism Spectrum Disorder states that “Restricted, repetitive patterns of behavior, interests, or activities” must be present. One of the ways the CDC has defined this can be manifested is:
“Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).”
Whilst I do not always agree with the medicalised wording in these diagnostic criteria, I do recognise that change is difficult for those in the autistic community.
Why do autistic people find change difficult?
There is often reference to autistic people having “rigid thinking” or “black and white thinking”. I like to think I can be flexible, however if something has been agreed I do expect that that’s how it will go. If something is done differently to what was agreed, I do find this difficult to cope with.
I , and many other autistic people, value consistency and predictability. Without it, my anxiety levels increase drastically. However, the world around us is often the complete opposite of this.
An example from one area of life is that the social world can be very unpredictable. I often don’t understand social norms and rules and I have worked hard to try and learn the rules that neurotypical people seem to naturally know and live by. So, when someone does something different to what I typically expect it completely throws me!
These rules are what I have to make sense of the world around me. It helps me know what to expect from others and to understand how I am expected to behave. When the rules aren’t followed it feels chaotic. There is no longer a sense of order and control, and this causes me significant anxiety.
I feel that people often dismiss these difficulties, but what can feel small to one person can feel huge to another. This is even the case within the autistic community itself. We don’t all experience things in the same way. Even just for me, what I can cope with changes at different times.
What can impact my ability to cope with change?
Some of the factors that impact on my ability to cope with change are stress, tiredness and pain. If I am experiencing any of these things, my tolerance for change decreases. The severity of these factors is important because, for example, the more tired I am the more I need consistency. If I don’t have this I will become overwhelmed and the more tired I am, the quicker this will happen. It’s important to also consider that change can increase tiredness and stress, so this can become a bit of a vicious circle!
Sensory factors can also impact my ability to cope with change. The world can be a very overwhelming place for people like me who have sensory hypersensitivity. If there are many competing factors in the environment, this can impact my ability to process information. When unexpected change happens at these times, it is much more difficult for me to process and cope with.
If I’m with a trusted person, I may be able to tolerate more change. I will be thrown and will experience anxiety, but I won’t feel alone in coping with that change. If I feel safe to communicate my anxiety about the change, this makes it even easier.
Who has made the change also makes a big difference. I find it very difficult if someone else requests a change. However, if I suggest a change, I do not experience these same difficulties. For example, if I planned to go to a coffee shop with a friend and they suggested a different venue, I’d find this difficult as I would have a set expectation about what we would be eating. However, if I fancied eating elsewhere I would be able to change if the other person agreed.
Final thoughts
Why autistic people find change difficult is a complex area and what each person can cope with will vary. But I hope this post provides some insight into some of the complexities surrounding autism and change.
In my next blog post I will be sharing strategies to help deal with change. I’d love to know whether other autistic people can relate to my experiences and what your tips are for coping with change – so please share them below!