Change Management
There is a whole branch of management consulting devoted to helping corporations and other organizations undergo change. In order to undergo any change thoughtfully, effectively, and with care for the people involved, the overall vision, the individual processes, and the needs and wants of the participants and any others affected by the change must all be included in the planning.
It takes a certain amount of practice to do this effectively, and as with any other skill, some people will learn it more easily than others. On the bright side, anyone who takes the time to learn how to assist an autistic spectrum individual through change will be very effective and much better buffered as the world undergoes major changes over the next several generations (the fall of oil and plastics, climate change, pandemics, etc.), and people must attempt to manage those changes for the best possible results.
Because autistic spectrum people are so much in need of effective change management, when we come out of the fog, we are often highly skilled at this. With moderate communication skills, we have an intuitive grasp of the details and the big picture, all at once, and can help others understand and work with each other to create a caring and organized process. Anyone who has seen an autistic spectrum child organize toys by colour, by shape, by size, or by any other attribute, has witnessed the beginnings of managing chaos, creating order to increase the amount of peace (and therefore functional capacity) an environment can inspire. The more of us who make it out of the fog, the easier the upcoming global changes may become.
If you want to help someone in the autistic spectrum to make a change, there are ways to make that change easier on everyone. Hit with a last-minute change in plans and no warning or time to prepare, most neurotypical people tend not to react positively. Add cognitive challenges, and any break from the routine can cause overwhelm and resultant emotional storms. It's hard enough trying to understand what's going on when it's relatively predictable, through the fog of too much internal "noise". Unpredictable events require a lot more RAM, which many autistics just don't have. As a result, we can dig in our heels and completely refuse to do new things or change our routines.
Compensate for this by identifying which changes are needed, being clear on why they are needed (for example, avoidance of future pain), identifying all the steps which will be different from a normal sequence of events, setting up options for retreat if necessary, and rehearsing the above enough times that we're clear on all the options well before we actually go through the change. Truthful communication and caring are tantamount; identify every change as though it were a crisis we need to successfully navigate in order to emerge unscathed, in the same way that health providers, governments, and businesses are being asked to prepare for pandemics.
For example, if you are planning to take your autistic spectrum child to the dentist, first read books about dentists. Role play what the dentist might do, and talk about what can go wrong if we don't visit dentists. Then ask your dentist if you can come to the office, meet the staff, have a good look at the equipment, move the dental chair around, and otherwise familiarize yourselves with the space, the process, and the people. After the field trip, do a thorough debriefing, answer any questions that come up, and let the child know when the "real" trip will happen, as often as is necessary for it to be remembered when you mention it. Arrange with the dentist to do everything in short, discrete stages, and to check between each stage if everything is ok, and if your child can continue. Before the actual trip, talk with your child about how to tell you if it's too much, and discuss what you will both do to end the trip and postpone the remainder for another time. During the visit, stay with your child, talk with your child, sit under your child on the dentist's chair if that is what your child needs, and leave as soon as your child indicates that enough is enough. When you're home again, as soon as there's a lull, debrief again, and start getting ready for the next visit. When dental visits become a known event, only the scheduling will need to be rehearsed, and the visits may very well be the same as for any other child.
When we make changes in diet, in water quality, in air quality, in what comes in contact with the skin, and in our social interactions, we need ways to evaluate whether those changes have been helpful, neutral, or detrimental. Because autistic spectrum bodies so often respond to chemicals and compounds as though they were drugs, we often have a period of withdrawal when problem substances are no longer accessible. This withdrawal period can be trying for everyone, but the worst is often over within several days, and three weeks is usually enough for the physical symptoms to disappear, though the cravings for things like sugar may linger.
As thoroughly as possible, make a list of behaviours or states that the person with an autistic spectrum condition really enjoys, a list of behaviours or states that he or she would avoid if at all possible, and a list of behaviours or states that are undesirable but not too stressful. The "enjoys" might include: really understanding what's going on; having a space "quiet" enough to focus; getting things more organized; feeling pain-free; having a positive social interaction; and so on. The "avoids" might include: pain and gas on digesting food; unexpected occurrences that are overwhelming; feeling excluded or targeted in social situations; debilitating head fog; and so on. And the "undesirables" might include: itchy or sore skin from rashes or acne; really bad foot odor; lack of attention or coordination; trouble falling asleep; and so on. When you have your lists, note how often particular things happen over a period of several weeks or months, depending on the variability or seasonality of symptoms, and add to each list as you go. When you feel like you have a quantifiable idea of quality of life indicators, you have something to compare with when you start making changes.
Making only a single change at a time gives you a better idea of what helped, but since you'll often only really notice the down-swing in quality of life when a substance is re-introduced (versus an upswing when it's removed), you can remove many things all at once as long as you re-introduce them singly. As much as possible, involve the autistic spectrum individual in charting symptoms, and doing the "experiment". If you've tried to re-introduce something like a soft drink several times, and had weepy episodes each time, we really understand when we've mapped it out ourselves.
