By Troy Krombholz

When I look back at my extensive family history of Autism Spectrum Disorder, I feel bad for two people; the family member with autism, and the family member helping take care of the person with autism. It’s not like we were all born saying, “Hey great I have a Neurological Condition called autism and this is going to be an easy wave to surf.”

Autism is just plain tough to live with, period. But if you learn to look for productive ways to work through difficult things, it is not impossible to get on your feet and surf some big waves. In this article I would like to briefly discuss the unique balance between protection and empowerment. People with autism need important levels of watchful protection as they live and navigate life. But they also need to be empowered to grow safely and flourish just as much as they can and are willing to as an individual. My family has struggled with this ever-changing sliding scale for several generations, and perhaps talking about some of our failures and strengths can be helpful towards your success.

My wife Susan and I love to garden and keep plants wherever we have a home to rent. We both have green thumbs and we love working with plants. However, I must say that Susan is a better weeder than I am. Though she really respects my nine-foot-tall tomato plants! So together we are a great team in a successful gardening season. One of our favorite veggie plants to try and grow each year is a type of pepper native to Central America. Several years ago, I was given a few small pepper seeds from a friend and each year, Susan and I are overjoyed if we can get those tiny little boogers to grow. Their climate is not native to the northern regions of America, so we have to work with them inside for a few months deep in winter to start cultivating those seeds extremely carefully. These little seeds are so super fragile, and are greatly affected by the environment where we live. Some years we can only manage to get a few starts, and other years we are transplanting them to bigger pots before too long. Their tender trunks are hair-thin for several weeks when they come up, super fragile. But with success, eventually our tiny little peppers produce fruit and we make a zesty dipping sauce with olive oil that is amazing with fresh bread.

“Many caregivers of ASD choose to keep things under wraps and exist day after day without checking on the roots of their protected house plant. I think a good question to ask is, “Am I providing protection for their roots, and do their roots need bigger opportunities to grow outside of a Status Quo Existence?”

Our house plants on the other hand stay inside where they get loved and watered and cared for. However, these plants can struggle in ways that we cannot see sometimes until its almost too late. If we are not watchful, our inside plants will become Root Bound, and their roots will have reached the maximum expansion and soon, they will rot, or die inside due to a lack of nutrients. So, we are getting better over the years, watching them closely as they grow, day after day without the conditions changing. Maybe the deer are not eating their leaves, and maybe the wind isn’t knocking them over with a storm, but they are still at risk if we don’t watch their unseen roots closely.

I think any family who truly understands the challenges of autism has had to come to terms with when to Protect and when to Empower the little birdy to fly. In my family history I would like to go all the way back to my grandfather and grandmother from my Dad’s side of the family. This is the side of the family that has had ASD passed through the men, for about five generations now. These grandparents lived about one block away from us where I grew up, about a four-minute walk. And in the first 20 years of my life, I can count on one hand the times I remember being in their home. My grandfather’s autism was quite extreme at times and so was his father’s. My grandfather was made fun of in his adult work environment because of how socially awkward he was. And because he was socially awkward, unpredictable, and stressful, my grandmother went into Protect and Conceal mode. Her goal was to keep the peace, keep calm, and they became isolated hermits lost in their world of stress without help. My grandfather was root-bound. When she died, his pot cracked and he was an even worse mess. He was unprepared to navigate life without her protective controls in place. The extreme tight parameters weakened his roots over time and he did not learn how to stand on his own two feet.

Then there was my Dad, who was also autistic, and he was not allowed to leave my grandmother’s presence for fear that something would hurt him, or that she couldn’t solve the problem. So, when my Dad was in his 20’s with his first big Chemist Traveling Job, my grandmother stayed at the airport, making sure he got on the plane safely, even though he was already married to my mom. She was over protective and suffocated the men that she loved and cared for, and had no education or understanding of Empowerment. I think many family members who have autism loved one’s struggle with this far more than they are willing to admit. I also feel bad for the caregiver/family members who live and work with ASD because they have one of the hardest jobs on the planet. They often give up much of their lives to help their loved one be safe, and to put out all the fires of trouble. But this is where we have to watch closely.

Over the past years working with people who have ASD, I see all too often the sliding scale heavily bent to Over-Protection, and the tender little flowers who CAN GROW are root bound, lifeless without flourishing. Happiness and progress can be found while living with autism, but many people choose the path of least resistance. Many caregivers of ASD choose to keep things under wraps and exist day after day without checking on the roots of their protected house plant. I think a good question to ask is, “Am I providing protection for their roots, and do their roots need bigger opportunities to grow outside of a Status Quo Existence?” This is what often frustrates me among my friends with ASD, who show signs of lethargy to grow or to progress more. I see many young adults, and older adults who have ASD that are content with being a root-bound house plant. I often ask my friends with ASD, “What new things have you learned or accomplished this week different than normal?” So, while there is great danger from caregivers to limit empowerment, I see many people with ASD content with doing the same.

In my situation when I was young, my mother also fell prey to over protecting me. Even my older sister was involved in policing me to a place of “TROY CALM DOWN NOW!” As a child I was always being told to conform to the “Normal Status Quo” of everyone else in the Neurotypical World that I lived in. No one could understand in the late 70’s and early 80’s that not kids on the spectrum are non-verbal. A local small neighborhood church called my parents and told them to NEVER bring me to their nursery again. Seriously? The principal of the school where I was to attend elementary forced the hand and would not allow me to attend school without seeing a therapist to be medicated for a condition that did NOT necessarily need medication. For fear of me being bullied, my mother took a job at the school so she could watch over me carefully and call the shots. After some years of progress, the school allowed me to eat my lunch quietly in the library away from all the other students in the loud cafeteria. This is where my love of books, stories and wonderfully tender librarians comes from! Long Live Librarians!

Now years later, I am a Daddy of two wonderful boys, one of which highly demonstrates ASD and the other who is neurotypical like his mother. And here now I am tested in a cycle of ASD where I have to learn for myself the balance between Protection and Empowerment. It’s my turn to stand up to the bat as a Daddy to decide whether I intervene in that moment, or if I should let my son fledge out his wings further? Obviously, each parent or caregiver has to come to terms with this sliding scale at some point in their involvement with ASD. The path of least resistance may be the quietest, easiest, and most calm scenario, but will it be the most productive in the end? With my sons, I want them to fly like soaring eagles over life’s obstacles and stand on their own two feet. But anyone working with autism knows that it is not that easy to achieve. Yet, we don’t quit trying to protect and to empower the ones we love.

“The biggest joy that comes from the depths of my heart is when I am allowed to be useful and helpful in situations instead of having my growth stunted quietly. Protecting people with autism is of utmost importance, but the other great important thing to remember is the idea of Empowerment. ”

People need to understand there is a fine line between protecting and empowering individuals with ASD. No one is going to fault you for being protective of the ones you love and care for. But if there is a fault to be had let it be that you gave them too much ice cream instead of denying them the joy of using their own wings to fly with a purpose. For me as a person living with Autism Spectrum Disorder, I have learned that it is totally okay to have personal limitations and to know where that line should be drawn. And I have also learned that there is no shame in a limitation.

When you have autism as an adult, it is easy to fail at this sometimes by choosing to self-protect and insulate yourself from problems, or perceived problems, and to disconnect yourself from society because you are afraid to grow outside of your safe parameters. Sometimes I have had to learn how to push through the peat moss walls that incubate me carefully so that my roots can grow into larger spaces in life. And when you can grow into larger spaces in life and flourish as a tender plant, your quality of life improves greatly. Parents are often the front lines in this conversation, but educators, therapists, and caregivers are in the trenches of responsibility also. My first-grade teacher was probably the first teacher to get an inkling of how to work with me in her class. Her goal was to be five steps ahead of me so that my hands and my brain would have something to do, to keep my brain from wrecking into a major crisis.

When you take the time to watch people while they work with their ASD family member, student, or client in a caregiving situation, you can learn very quickly through simple observations as to whether the person with ASD is empowered or protected only. I am not a perfect Daddy or hubby, but I do strive to be better each day in how I relate to those around me. The biggest joy that comes from the depths of my heart is when I am allowed to be useful and helpful in situations instead of having my growth stunted quietly. Protecting people with autism is of utmost importance, but the other great important thing to remember is the idea of Empowerment.

Question: Can I as an autistic person make progress and become a super strong plant capable to weather many bad storms? Or am I content with being a docile house plant? Let’s continue to pay attention to this sliding scale and choose to Protect & Empower those living with autism. The minds and hearts of ASD individuals can contribute to society so much more than you think.

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