We often blame ourselves, so why do we get mad when others blame us?
*My comments are directed towards life outside of and beyond therapeutic approaches to behavior modification. Not all families are fortunate enough to have adequate therapy opportunities. Also, the time will come when therapy is no longer an option. Jessica hasn’t been in any kind of therapy for the last 10 years. I am the mother of an autistic adult who also has cortical blindness and is developmentally disabled. This is the perspective from which I speak about blame.
Often, no matter how hard we try, autism wins.
Autism and Family Life
You can’t help but pick up on clues about specific triggers when you have an autistic family member living in your household. Most (but not all) household members learn how and why to avoid them (like, in my case, to help me maintain my sanity).
Parents and close family members hold themselves to a higher standard after learning how to avoid or minimize specific triggers. It is an accommodation we make for our loved one. When we fail to avoid a trigger, we feel like we’ve done something wrong. We accept the blame because we often have the ability to avoid the trigger. We don’t place blame on the autistic person for being autistic.
Unfortunately, even within some families, as within mine, there will be those that fault parents for their failure. The blame is not because the parents failed to avoid the trigger. Instead, they might look at the autistic individual and think, “____ is just spoiled. That mom/dad has tiptoed around ____ her whole life. Mom/dad should have gotten ____ acclimated to those triggers by now.”
Accommodation vs Spoilage
In general, in the outside world (society, community, whatever) specific triggers are not known or understood, in a large part because triggers are so specific to each individual. This can make behaviors often look like a behavior problem, as opposed to a manifestation of autism.
The blame the outside world (family, parent, caregiver) assigns to us is different from own view of blame. Unlike us, they don’t think – that mom/dad messed up, they forgot to protect her from her trigger, or, it’s mom/dad’s fault, they should know better.
Instead, they probably fault us because they think we have let a behavior problem run rampant. They see a problem behavior that a parent hasn’t fixed but should have. In children, they see a spoiled child. In adults, they see a grown up child who was ruined for not being disciplined. (I know this because I have been told this about Jess & myself.)
Here, I attempt to create a comparison of situations where it would be illogical to view accommodations as spoilage. Manifestations of autism should not be equated to being spoiled.
Accommodation: If our individual was unable to ascend stairs to get into our house, we would build a ramp.
Spoiled: “You’re going to have to figure out how to get up the stairs without a ramp because you are not going to grow up being catered to like that.”
Accommodation: If our individual was blind and taken into an unfamiliar environment, we would provide the necessary navigation tools (white cane, guide doge, sighted guide) so they could be mobile and safe.
Spoiled: Leave the loved one out in unknown territory without tools for navigation and say, “Go find our car to get your coat, then come back here. You gotta learn,”
What about food aversions vs spoilage
Most of us have some food aversions. Hannah hates bananas. There is something in her body that says – don’t eat a banana. She can’t even cope with the smell. To get her to eat a banana, I would have to hold her down, pry her mouth open, shove it in, then somehow make her swallow it. Hannah has never been a good eater and would have starved to death if the only thing available was a banana.
She’s not spoiled because I never forced her to eat a banana.
What about phobia’s vs spoilage?
What if someone, like me, hates granddaddy long legs – like beyond what is normal and reasonable. I’m not spoiled. I don’t behavior problem. They just freak me out.
Manifestations of Autism vs Spoilage
The wiring of the autistic brain is something most of us will never fully understand.
Why wouldn’t we – as family who live with autistic individuals every day, or often, or most of the time – make necessary accommodations as often as possible to make life more functional for all of us, less stressful, easier.
People are shutting themselves off from the world in many ways when they are in a panic, having a meltdown, or whatever you want to call it. That’s not healthy. So, the more we can avoid situations like that, the more we can keep our individuals engaged, and integrated, and involved.
Back to Jess and Hannah
Hannah slipped up and told Jess about something that might happen. Why? Because if it does, it’ll be a good thing – a happy thing. Hannah was trying to cheer Jess up. However, it immediately created concern for Jess because of her thoughts of, ‘What if it didn’t happen?’ ‘If it didn’t, why not?’ and ‘If it does happen, what are the consequences?’ She got stuck on this circular wheel of uncertainty.
Then, Hannah launched into self blame. She realized if she hadn’t pulled the trigger, we wouldn’t have had that episode of anxiety. I don’t like hearing Hannah blame herself. I repeatedly told her to not worry about it, it’s okay. But, that is what our world is like here at home, and it’s hard to not go to that place.
I think we are right
We, the families who have the reaction of, “Oh no! I slipped up. Now he/she is going to have a meltdown because I forgot to avoid the trigger,” have the correct view.
I hope the rest of the world can stop looking at autistic individuals as having behavior problems and instead view what they see as simply as a manifestation of autism.
We don’t want our autistic individuals to have to always stay home, in this protected environment where we know how to control triggers. It is comfortable and often makes life easier, but it is not healthy or practical to have them withdraw from or hide from the community. We want our loved ones out in the world to have experiences and travel. We want them to be around other people.
My hope is that people can begin to understand the concept of triggers. Most people are not going to know what those triggers are because everybody’s can be different in one way or another. Just know that anything can be a trigger.
And know that autism wins.
Autism Awareness – All we can do is educate, and keep educating.
My lovely daughter is 35 and has a disability of Autism and developmental disabilities. A pet peeve of mine is explaining over and over to support persons and others, is that loud noises, screaming people/babies and witnessing physical altercations is a trigger for my daughter. This is not spoiling her or nourishing anxiety. She has sensory issues. I explain that she needs a simple calm assurance that she is safe and that the person with a problem is ok. While this is a trigger that I have helped my daughter manage through brief logical explanations ie the crying baby is hungry or tired, his mom will help him etc… Often when I assure my daughter people look at me like I have 3 heads. Question: Who wouldn’t be a little nervous when hearing screaming or witnessing a physical altercation??? Group home staff did not seem to get that witnessing a resident slap at a staff member, hearing another person scream or episodes of crying when heard semi-regularly can become a “Trigger”. I had to make the group home institute a “Protocol” that when another person is having an issue, my daughter will be guided to another room, helped to do calm breathing, and assured she is safe. As you said previously, person’s with Autism experience the world is some different ways than we do. Lastly, unexpressed health issues can also be a behavior trigger. I have documented 4 main health issues that can be triggers and and always to educate support persons to look at pain, discomfort etc… as triggers. Enough said. I will get off my soapbox now!!
Thanks so much for your message! I completely understand what you are saying. Jess extremely compassionate and has similar issues with needing to know that others are okay. She truly experiences others’ pain and anguish. Establishing that protocol sounds like a fantastic plan. I hope that helped!
And so often when the community fails to understand triggers [because they were never taught or never got to observe] they hide and withdraw from the autistic people in their lives and from the world. And this extends to the rest of the world. And this is just as unhealthy.
Yes, you are so right!
I think this has been my favorite post thus far. I think many need to hear it- parents and outsiders. ? I love you guys and am glad I get to be apart of your loves!
Thank you Miranda! We are thankful to you too! Yes, lots need to listen, but I’m guessing the ones that need to hear it most won’t listen. ?