In the name of being easy-going, it is so compelling to want to dismiss small scrapes that come up while living with an adult with high functioning autism. After all, it’s not the individual incident that is so egregious, horrible or disruptive.
However, the cumulative effect over a period of time enduring these “incidents” regularly, can definitely impact the partner, parent, or support person of someone on the autism spectrum.
Maybe you have experienced something like this.
The Missing Scissors
One day I went to use the scissors I keep on my dressing table. I had recently replaced them when my son with ASD had “borrowed” the first pair and lost them somewhere in his room.
Now the new ones were missing again!
I keep them there (right where I know they will be handy) because I frequently need to use them to cut off a tag, a thread, or open a cosmetic package, etc.
Having the tools I need where I need them is something I do to be organized and make my own life just a little bit easier. When I use one, I mindfully put it back so it will be easy to find the next time.
When I found the scissors missing again, especially so soon after I had replaced them, I was irritated. I called loudly out to my son to bring my scissors back NOW!
“It is the cumulative effect it has on our life when incident after incident arises and when we are ignored, or worse yet blamed, if we don’t just take it in stride.”
My son appeared in the doorway with my scissors and promptly criticized me for being too angry all the time. He reminded me that they were only scissors, and he had only borrowed them! He told me I was over-reacting and blamed me for my irritation.
The look on his face made me feel like I had kicked an innocent puppy.
Suddenly I went from feeling angry, frustrated and justified to feeling like a jerk!
It is the cumulative effect it has on our life when incident after incident arises and when we are ignored, or worse yet blamed, if we don’t just take it in stride.
It isn’t the small infraction of borrowing things and forgetting to return them that is so upsetting.
I want to be easy going. I want to be kind and gentle and understanding.
The cognitive dissonance between my feelings and my desire to be a good person only adds more pressure.
On the same day as the event with the missing scissors, my son (who is 21-year-old) had a therapy appointment. I made sure he was up and ready to go in plenty of time for what he said was a 12:00 appointment. He drives himself, so I figure if I make sure he gets out of the house on time he will be on time (At $3.00 per minute out of my pocket, 20 minutes late is expensive)!
When it was time to leave, he double checked the confirmation voicemail he received and said his appointment was actually at 1:00, not 12:00. Ok, I can be flexible and he is up and ready, so no problem, right?
He assured me “I got it mom!” So I went back to my work and left him to his own devices.
An hour later, I heard him leave at about the right time, so I didn’t give it another thought. If he went straight to the appointment, he would be on time!
I got him launched for his day, so I crossed it off my mental list of things to remember, and I could move on, right?
Not so fast.
Things often do not run so smoothly and are not that easy when you are dealing with an adult with ASD.
This day was no exception.
Although he had seemingly left on time to arrive by 1:00, a phone call came from the therapist’s office at 1:15 saying he was not there yet! I called his cell and tried to Facetime him, to no avail. I started to worry because now what should have been a 20-minute drive, was a 45-minute drive, and I wondered what had happened to him. (Later I found out that the culprit was the combination of the irresistible Golden Arches and a lack of sense of time).
I called back to the therapist’s office, worried he was in trouble somewhere en route and they said he was just walking in.
Although relieved, I had lost my work rhythm, gotten distracted and borderline upset for no real reason. It was just another dose of the aggravating disruption that often goes with life with high functioning ASD.
Again, not a big deal in itself, and I want to let it go, and just let it fade away. But before it could, the scissor incident happened, and now I was feeling the strain of insult to injury.
After 5 or 8 or 15 incidents like this per week, it really wears me down.
If I say something, I get blamed for being too uptight and taking things out of proportion. But if I never say anything then he never learns that his actions effect those around him!
A conundrum to be sure!
“Even though it is not driven by mal-intent or purposefully executed, the difficulty, self-doubt, and confusion we experience in living alongside an individual with high functioning ASD (especially if they are not diagnosed) can be very debilitating. In our work at the National Autism Academy, one of the most profound supports we deliver is to validate the experience of those living with people on the spectrum.“
It’s a tough spot which has some long-term effects on us in the form of irritation, agitation, massive frustration, self-doubt, a feeling that life is out of control and the sense that we can’t win no matter how hard we try.
Over time experiencing this pattern, we become defeated and depleted!
In my mind’s eye, I always had a picture. It was an image of me working so very hard to fill a balloon with sand. Every time I would make progress forward, my ASD spouse (or son) would come along and unintentionally rip a whole in the bottom of my balloon, effectively undoing all the progress I had made, while at the same time insisting I was the problem and telling me I was overreacting! Talk about frustration!
That’s what happened with the scissors.
Rather than managing his own life to have scissors available when he wanted them, he counted on me to keep scissors where he can find them when he needed them.
This pattern has a remarkable resemblance to a very subtle and unintentional form of gaslighting that happens when our socially based perspective clashes with the very linear, compartmentalized perspective of someone with ASD.
I want to emphasize that actual gaslighting is intentional and designed to inflict confusion on purpose.
The form of gaslighting we experience living with an adult with ASD is probably not pre-meditated, nor intentional. Rather it stems from the difference in our perception of reality when compared to the sometimes-skewed perception of reality of those with ASD.
If you are not familiar with the term “Gaslighting,” according to dictionary.com Gaslighting is defined as:
“…a form of emotional abuse or psychological manipulation involving distorting the truth in order to confuse or instill doubt in another person to the point they question their sanity or reality.”
Make no mistake, this is not intentional gaslighting on the part of the person with ASD, but that doesn’t make the effect on the rest of us any less impactful.
Ultimately incident after incident begins to undermine our ability to believe in ourselves, in our own perceptions, and in our ability to navigate life successfully.
In time, I experienced a sense of depletion that was fueled by the fact that I could endlessly try to organize myself, and every time I did, one of my family members would hijack my organization!
My desire to be organized and the hard work I put in to creating organization were absconded with! My loved one simply saw the behavior as the easiest means to an end, without any recognition of the inconvenience it might cause me! The benefits of my hard work were appropriated (although somewhat innocently) by someone whose view of the world does not naturally encourage their understanding of how others around them are affected by their actions.
Psychologists describe this as the lack of Theory of Mind many people with ASD experience. They believe others should see a situation just the way they do. Just the way my son does… “What? It’s no big deal, mom, they are just scissors, and I just borrowed them! You are over-reacting!”
“Over time, this pattern creates an extreme sense of exhaustion for the person doing the work.”
Every time I would clean up, improve, or organize a certain area of my home so that I liked it, one of my kids or my ex-spouse (also ASD) would find it so appealing that they would commandeer it! They also loved the sense of ease that went with organization and an organized environment, but they weren’t able to create it on their own!
Over time, this pattern creates an extreme sense of exhaustion for the person doing the work.
However, understanding it serves a good purpose. It not only helps us to find healthy ways to take care of ourselves, and to manage our understanding of ourselves, but it also reminds us that our loved one with ASD views the world differently, and probably does not have the perspective that would enable him or her to understand their impact on us.
Walking the line between accountability and acceptance becomes easier; now it can be done without the bitter relationship poisons of shame and blame.
One final thought.
Our emotional response to all of this may include feelings that we are being disregarded, and what we want doesn’t matter, our feelings don’t count, especially not to our ASD loved one.
That’s probably not true, but by neuro-typical standards that’s the way it looks.
That’s what makes it so important to ferret out the intention and modus operandum behind the behaviors of someone on the autism spectrum.
While I do believe it’s possible for people with ASD to recognize their role and be accountable, it doesn’t happen automatically. It takes intention on both our part and their part.
If you are thinking (especially if you haven’t experienced what I am describing) that I simply have to stop my loved ones from disregarding my boundaries, then you have never experienced life with ASD! That’s a bit like saying we need to ask a snowman to come inside out of the cold – doing that might be logical to those of us who are feeling frostbitten, but to someone with ASD who metaphorically can’t feel the cold, it seems like an unreasonable request!