Helping your autistic loved one cope with change

Not this kind of change!

For many people, change is not a difficult thing. Most neurotypical people find that doing things spontaneously, or making plans and then changing them later on do not present them with problems.

Change, in life, is inevitable. However, not everyone is able to cope with change in the same way. Autistic people may need different types of support in order to process and cope with changes in their lives. This is not to say that we can't cope with change, just that we need to approach it slightly differently.

Recently, my family has faced enormous change, most of it unexpected. It has got me thinking about how my neurodivergent family copes differently from other families when it comes to change.

Different kinds of change

There are three types of change which we all experience:

1. Sudden, unexpected change. This can be in the form of a family emergency, sickness, bereavement, or other big and dramatic events.

2. Planned, expected change. This can be something like moving house, going away on holiday, the start of a new term at school, or another event which is known.

3. Expected, but unknown change. This can be starting a new job, school, or another type of change where you know something is going to happen but you don't know all the information in advance.

How change feels as an autistic person

Sudden, unexpected change.

Unexpected change can feel like suddenly walking into a patch of quicksand

When there is an unexpected, sudden change, such as when I broke my wrist a couple of weeks ago, it is very difficult to think clearly. The effect of this is something like being on a beach and suddenly finding that you are walking on quicksand. You have to think carefully and quickly and adapt to the situation. This is not easy as an autistic person. Many of us thrive on routine and predictability, and when this is suddenly taken away, it is very unsettling.

For many autistic people, including me, there is little distinction between sudden unexpected change, and spontaneous planning. An example of this would be being around neurotypical family members who like to make spontaneous plans for the day and then just do them with no prior planning or thinking. I have found that for my family this does not work at all. It is too unsettling not to know where we are going to be, what time we will be back, what we will eat, how we will go about our day, and other aspects which may not even occur to somebody who is neurotypical. It is hard to convey just how difficult this can be. To find that you are doing something, for example on a day out, and have no idea how long it will go on for, or when you will be able to do other things, is extremely unsettling and takes away from the enjoyment of whatever it is that you've gone out to do. It may depend somewhat on who the person is that is doing the spontaneous planning. For example, I find sometimes that if I'm with my siblings or my parents, I get less stressed than with other people because I can hold in all of my anxieties and just trust that we will have a good time. However even this can be stressful sometimes.

Planned, expected change

Some of us look a little more closely than others at the change looming on the horizon

For autistic people, planned and expected change can still be a difficult thing to cope with. I remember preparing to go to university. I was excited to be going, but terrified. I remember crying all summer, as I couldn't visualise what would happen, even though I had chosen my course and my accommodation months previously. Having a plan can help in preparing for change, but it can also make it feel like a looming object on the horizon.

Different people cope with change differently. For example, my husband copes well with planned change. But he struggles to cope with unexpected change as he finds it too unsettling. I, on the other hand, am the opposite. I am good at coping in the short term with an emergency or sudden change. I do usually react afterwards, however, as I process what has happened, but in the moment, I am able to deal with it. In contrast, I struggle to deal with planned change. If I know that something is coming up, it makes me very anxious, as I know that there will be something different happening and I am unable to control it. This anxiety happens even if I am the one that has planned the change in the first place, something which I think others sometimes find difficult to understand about me.

Planned, but unknown change

This can be the most difficult one to define. Examples of planned but unknown change could include moving house, moving schools or job, or having a baby. You know that the change will come, you know that it was will create differences in your routines and your life, but you do not yet know how or sometimes exactly when that will come about. For many autistic people, this can be as challenging as sudden, unknown change. The fact that this is planned or expected does not make it any less difficult to cope with in the end.

So how might your autistic loved one respond to change?

Being presented with change can result in an anxiety response. So anxiety behaviours which you may have seen your autistic loved one experience in other situations may emerge when they are trying to cope with change. For example, when I'm anxious I get a tight feeling in my chest, I get temperature fluctuations, I become hyper aware of sensory input around me, and sometimes I become so overwhelmed I become overwhelmingly tired. This is also known as a shutdown. Some autistic people may experience a meltdown. Not all autistic people will experience the same manifestations of anxiety, but they will all feel some form of anxiety through changes to their usual routines.

You may notice your autistic loved one spending more time on special interests, or immersing themselves more in things which they enjoy or find comforting. For example, my husband gets a lot of enjoyment and comfort from playing computer games. In recent weeks, since breaking my wrist, I have noticed him playing more on his computer as a coping mechanism. Personally, I have been spending a lot of time doing jigsaws, listening to music, and generally trying to find hobbies which I can do one handed. Our daughter has been finding shows to watch back-to-back on TV, drawing on her iPad, and at times behaving as she would have done when she was younger. We have recognised this as her coping mechanism, and are trying to be patient with her as we can see that she is coping in her own way.

So how can you help support your autistic loved one to cope with change?

First of all, recognise, that this is much more difficult for them than it is for you. Be patient with them as much as you can. If they have sensory aids which help them to feel more relaxed or more comfortable, then it is good to encourage them to make more use of those as they need. For example, weighted blankets, ear defenders, fidget toys, particular sounds or smells, or anything else which they like to use to help them feel more grounded and calm. It is also important to bear in mind that they may have a stronger response to situations than they usually would. For example, there may be more likelihood of meltdowns, sensory overload, or other difficulties than you may normally see them experiencing. This is normal. Allowing your autistic person to release their emotions and their anxieties in whatever way they need to is very important for their mental health.

You may also wish to encourage your autistic loved one to focus on what has not changed. This can be almost as important as focusing on helping them to cope with whatever the changes that they're coping with. In the case of my family, we have re-directed our attention to the aspects of our family life which have remained the same since I broke my wrist. For example, we are still enjoying our mornings and evenings together before and after school as before. We are still able to do many of the same things together, just in a slightly different way. In re-focusing on what has not changed, it can help to bring more to your autistic loved one’s attention what aspects of routines and ‘normal life’ are still in place, and this can be very helpful and reassuring when coping with change.

The most important thing you can do for your autistic loved one when they are coping with change is to listen to them. Believe them, reassure them, understand that their responses may be stronger or different from usual, but always be supportive and give them the space and the time that they need to process whatever change it is that they're facing. They will be the better for it.

Laura Webb is a director of NeonDaisy