Seeking Guidance?

It has been written: “Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds and sights… Set routines, times, particular routes and rituals all help to get order into an unbearably chaotic life. Trying to keep everything the same reduces some of the terrible fear.” (Jollife, et al (1992) in Howlin (2004), ibid, p.137.)

I agree, other than concerning the inclusion of the word ‘everything’.

Is it sensible to have some routines in place? Most definitely.

Is it a wise idea to allow and even encourage control where it is possible to have control (e.g., with how things in bedroom drawers are organised, as one example)? Absolutely.

Is it logical to have some structures in day-to-day life that assist the navigation of all other information overloads of whatever kind (social, mental, sensory, emotional etc)? Yes.

However, we must align the wisdom and sense of lessening avoidable stresses by encouraging some control and routines with the recognition of some unavoidable universal truths:

• In the real world, it is impossible for us to always avoid change.
• We are not able to control every situation, person or life event to the extent that we will not have to manage change.
• We will need to navigate some change at different times and in different ways. This is true for each of us. 

If an autist of any age has been told (or has learnt to believe) they must avoid change because it is something we struggle with, we have set ourselves (as a collective) up for catastrophic failure. Change is not something that can be consistently avoided. Instead of reducing a stress (the difficulty of managing some changes), we have created a different problem, haven’t we? Have we now not created an additional barrier where we must attempt to manage the failures and frustrations of the reality that we are not able to keep ‘everything the same’ and avoid change.

It is impossible for us to keep everything the same unless we attempt to live in some kind of life vacuum.

What do we do with that?

There are many ways to help autists (and others) overcome some aspects of the need to cope with change. Many ways and I believe these are vital to help us live the best lives we can.

Am I advocating exposing the autist to every conceivable barrier they face concerning change to make them ‘get over it’? Most definitely not. That would be foolish and ridiculous and would end in the worsening of the already established fears and anxieties associated with change. I am, however, suggesting we expose ourselves/other autists to a measure of change.

Here is one template of a pattern that could be utilised if the people attempting to manage the fallout of change are prepared to give it a go (and not just try it once!). The speed of this process needs to ideally be slow. It must be a process that is calm, measured and all interactions about it must be managed sensitively. Trying to 'activate' such a process whilst the one managing the change potential is heightened is (very) likely to end in catastrophic failure. This pattern is transferrable to a variety of contexts:

• Have a conversation with the one struggling with change about the fact that change is something we all must find a way to manage at some levels and at some times because there will always be some kind of changes present in life.
• Recognise that it might feel uncomfortable or scary or as if it is too much but alongside that, is the truth that we cannot always avoid change.
• Give the autist some time to recognise there is truth in this. They may want to think of changes that can’t be avoided (e.g., taking a different road to a location as a result of a road closure/needing to use a different toilet because the one usually used is out-of-order/having to buy a different cereal because the preferred brand is not in stock… This list has the potential to be endless).
• Lead into a discussion that because we cannot avoid all change, we therefore must learn to cope with some changes. State explicitly that this process of exposing ourselves to small changes will also help us (even if it’s just a tiny bit) to manage other changes. Will we make our fear of change disappear? No. But will we have better skills to cope with managing change? Very likely, yes.
• Ahead of time, together (with the autist being involved) set the plan of action concerning the smallest change that can be made to a particular routine or plan. Maybe you’ll go to the shop straight from work rather than going home to shower and change first. Maybe the child will do two things in a different order when they get home from school. The options are many. My advice is that it is best to begin with a minor change. Yes, understood that a minor change for a non-autist can be a major change for an autist, but when the autist is part of the plan formation, and they can choose the change (maybe from a choice of two options if having free choice is too much) which gives an element of control in the process.
• Tell the autist it’s an experiment and tell them they can analyse how they react or feel as a result of navigating the planned change. They can share what they feel/experience if they choose to. No pressure. Anything that they choose to share is right and good and exactly their truth. Do not talk them down or try to make them see it differently. Their experience of it was their experience and is fully valid and it IS their experience even if it is not yours.
• Once the process of navigating the small change is complete, talk about what worked well and praise the achievement. How do they feel about the achievement? (Whatever they say – even if it’s negative, accept it. Encourage them by saying that you are proud of them for doing it because you know it wasn’t easy for them.)
• Depending on how it went, either plan the next change (explaining we won’t always be able to plan for the changes) or leave it for a bit before repeating the process.

It will help. Processes such as that described above, will help. Does it need to be exactly as prescribed above? Definitely not. However, it’s a pattern to work to if a pattern is helpful. You know you/you know the autist you are aiming to support far better than I do.

I have repeatedly seen the opposite approach used with small children. Parents have tried to fully avoid changes because they fear the reaction of the child. I understand that it is not easy to face some of those reactions, but as avoiding change is impossible, we must find a way to help the child or adult be exposed to change. Often, as a consequence of attempting the full avoidance of change but failing (because it’s impossible to do so) the negative reaction of the child has only increased when they have had to face a change. Sometimes this ends up being a full-on meltdown or it can cause them to lash out physically towards someone (often their mum, as their safe person, in many cases).

With adults, the circle of what it is possible to fully control becomes increasingly smaller as time goes on, and potentially, so does our world. Isolation can be an issue for us anyway, right? Trying to avoid the inevitability of having to face changes, especially where other humans are involved, only pushes us further into isolation as we find what we can control seems to become less and less.

However, there is (as I hope is clear) a very strong possibility that some planned exposure to change, will lessen the anxiety around change as a concept. It will not remove all fear of change. It will not make every change easy to navigate. But it will improve the internal and external responses to change. The autist will then be just a tiny bit more prepared to have to face what is real in our world rather than a non-reality that will only result in increased fears and anxieties.

Is it sensible to have some routines in place? Most definitely.

Is it a wise idea to allow and even encourage control where it is possible to have control (e.g., with how things in bedroom drawers are organised, as one example)? Absolutely.

Is it logical to have some structures in day-to-day life that assist the navigation of all other information overloads of whatever kind? Yes.

Is it sensible to accept changes are inevitable? Yes.

Is it wise to recognise that actively learning some skills to help an individual cope with change is wise? Yes.

Might some planned exposures to small changes potentially help? It is highly likely that they will, yes.