As noted, I grew up with two Aspergers parents. I wanted them to change, needed them to change, knew everything would be better with change, but to help them I had to put my own needs away and focus on entering their worldview and reshaping it.
The biggest challenge my parents had was in getting into thought loops that they had no way to break out of. Once their brain got into a rut it stayed in that rut, repeating the thoughts and behaviours over and over and over again. This certainly happens in neurotypical people, but in non-neurotypical people the drives are very much enhanced as they have less sense of external stimulation to redirect their thoughts.
Loop breaking was not easy.
The first step was gaining their trust. If they thought I was just trying to break or hurt them by breaking or hurting the comforting cycles of their mind, they would lash out, reject me. Trusting that I was being honest and respectful was the only way that they would open up and let my voice in.
The second step was understanding their loop better than they did. Just telling them that they were thinking wrong was useless, intrusive and offensive to them. Their thinking is their identity and it had to be respected. It couldn’t just be replaced with whatever I thought was better, it had to be adapted, modified to still carry their values but also to be more effective,
Any programmer who has maintained old code understands this challenge. You have to be able to think like the original coder to understand the flow and make subtle changes to it. Otherwise you have to rewrite everything at the risk of it not working with old code and of other people not being able to maintain your code.
Once they trust you and you have entered their thoughts enough to understand them, the next step is the most difficult.
With neurotypical people you can make suggestions about better approaches, give them a new view and let them start to understand and integrate that new information, those new strategies.
With non-neurotypical people you have to stand by them, not just for minutes or hours, but for a long, long time while they try and change their thinking. Their powerful tendency is to go back to thinking in the old way, falling back into that same comfortable and ritualistic pattern.
It doesn’t take just quality time to help a non-neurotypical person break their thought loops it takes quantity time. Changes don’t take hours, they take months or years. When they slip back they need others to be there, not in frustration and anger that the old patterns have returned but rather in compassion and persistence in creating new, robust and better pathways.
This is, of course, the most difficult part of helping non-neurotypical people break old and valued thought loops, the calm addressing of them over and over and over again. If you can’t keep up the work you end up watching them snap back into old habits which do not allow them to change and adapt to be more effective.
My mother was a bad front seat driver, always ready to gasp or shriek when something came into her view. She caused accidents this way when my father was driving, startling him into bad defensive choices that didn’t consider the whole situation.
For years I had to help my father drive from the back seat, not only giving detailed directions but also using a tongue click when he was getting too close, when he needed to slow down. The faster the clicks, the more urgent the slowdown. I knew that he could not process language quick enough to brake so instead I used simple sounds that he could engage.
When I started to drive in the car, my mother next to me, I knew I had to change her thinking, to break the loop in her brain. I started explaining how I was seeing the road, pointing out cars far in front of us that could cause problems. Instead of just looking shallow, I started to teach her to look deep.
I used other engagement tricks too, like asking her to identify car models ahead of us. This would not only help her know what I was talking about it would also give her abundant curiosity something to engage, allowing her to think more strategically and with control, rather than just leaping in fear when her mind caught a flash.
My sister told me that as she drove my mother after this, she would often make comments on other drivers, noting that I “would have yelled at them.” It was more calling other drivers out on risky choices, but it was the same thing. My sister understood that it was a good thing for my mother to be more engaged, both keeping her calmer and teaching her alertness and discipline that benefited every area of her thinking.
This process of gaining trust, of understanding thinking, and then staying with people over a longer term to help them break out of loops, become more aware of what is going on around them, set clear priorities that allow thoughtful response over habitual reactions is something I had to learn to take care of my parents. It was the long term fight that might just make things better.
Loop breaking is work that I had to learn how to do to help my Aspergers parents. The rewards are always very limited both because you know that constant vigilance is required, being ready to go back and rework the process, reinforce the lessons time and time and time again, but also because the person you are helping is stuck in their own loops, finding it very difficult to ever value, respect the amount of work you put in. They are just fighting the same battle over and over again so they have trouble seeing the efforts of the helpers.
Human relationships are best if they are a two-way street, each offering respect, understanding and care to the other, but that is often an impossible ask for the non-neurotypical who live so powerfully in their own loops.
It’s easy to get frustrated with someone elses looping mind, with habits and rituals that seem to cycle forever with no break. It’s much harder to put in the work to help them break that loop and find new ways to engage the world which are outside their current comfort zone.
I knew that fighting to help my parents break their own loops, fighting with them to find new ways to break through was important, even if I knew that they would never be able to fight for me.
I found that if I wanted to help my parents, if I wanted to live with my parents, if I wanted to love my parents, I didn’t have any choice.