My name is Carron and I am 25 years old. My original purpose in the system, after I split from Maria, was to comfort those who needed it after our first breakup in 2015, but when I gave birth on the inside, that, and the rest of my life, changed. My son, Jonothin, displayed all the classic signs of autism from babyhood until the present day, but can never be diagnosed by a professional independently of the rest of us. The only way I know he has anything that would be considered a disorder is through my own research, and the help of others in the system. The only way I could get any kind of help for him was to research it online and then have others within the system assist me in putting together a program of sorts that was based off of my findings and his needs. In the outside world, a mother’s opinions, even if based on research from reputable websites, are not enough to make a diagnosis, let alone implement a program that teaches their child skills they will need for life’s ups and downs. But on the inside, where the eyes of that unwelcoming place cannot see, where access to legal personhood is nonexistent, and where the best professionals are those who are actually involved in a situation, a mother’s opinion is all it takes for a change to be made, as far as their child’s wellbeing is concerned.
Jonothin is 11 years old now, in 2017, just one outside year after his birth. At first, when at two years old, he began exhibiting repetitive behavior for hours at a time on the inside, I simply assumed that he was an insider who, for some reason, wished to present himself through birth, and was responding to some event that only he was aware of, and given our collective history of such behavior, I wasn’t concerned. I cannot say in outside units of time how long it took me to realize that something was different about him, but when on the inside he had turned three and not spoken a word, I began my research. What I found was, to say the least, a shock. Suddenly, things about not only my son, but others within the system, began to make sense, as much as I wanted them not to. He was not reacting to a memory he held, I realized as we all began implementing cause-based interventions across the whole of the system to address harmful behavior that he had displayed. Avoiding anything that had to do with behavior modification, simply observing him in his repetition, lack of speech, intense interests and other unusual mannerisms, and drawing on everything that I had shown to the adults I shared my life with, we all came to a stunning realization that would change the way we looked at our world, for a long long while. Jonothin, My son, an insider, a being who was nonexistent in the eyes of the law, who did not have a body to call his own and so could never get professional help, had autism, and it was up to the rest of us to give him a chance at living an enjoyable life despite the challenges that this might throw his way.
It was not an instant conclusion that we drew, and in fact there was much doubt surrounding the idea until we took a closer look at the condition, for lack of a better term, in all its presentations. There were things about him that, before the research I had done, had seemed insignificant. For example, all of us, in the physical sense, experience overstimulation from some kinds of sounds more than the average person of our body’s age, and our level of tolerance to those sounds changes depending on who is out at the time. Jonothin had one of the lowest levels of tolerance I’d ever seen in a child here, and reactions to overstimulation that were unique to him, and consistent with autistic behavior. When he did begin to speak shortly after turning four, he began to echo the words of others, using short sentences in specific contexts, as though he was reading from a script, and it was at that point that my patients with the medical community of the outside world vanished. It didn’t matter that on a physical level, we were nurotypical, I realized. We would never get proper help for him anyway, because professionals would never see what I was seeing, I reasoned to myself and the rest of us, and If that was to be the case, and the diagnosis of autism depended on nothing but elimination of other possibilities, behavioral observation, and knowledge of what to look for, we had every right to operate under the idea that this was indeed the right name for what we were seeing until something else proved us wrong.
With this new approach, we began shamelessly using what we’d learned from our own experience, as well as non-aversive methods of treatment that we’d found online, to improve Jonothin’s quality of life. Our goal was not to make him into something he was not, but to teach him skills that would allow him to manage his own world and do what he pleased as he grew older. We rejected much of the behavioral therapy so commonly associated with the situation we found ourselves in, instead providing interventions that looked much like this: Auditory overstimulation was handled by providing him with ways out of the situation in question; we joined in with his stimming, or repetitive behavior; we fixated right along with him on his interest of the moment. Unlike some treatments for autism on the outside, we did not seek to extinguish any part of his behavior completely, opting instead to replace harmful actions with other options and encourage those options alongside the non-harmful things he was doing to begin with. We had no tolerance for the so-called “norms” of the social world, a world which, in large part, had already rejected us for speaking our minds and did not seem to care what happened to any but Maria. Even if we had, our own history with such things as behavior modification would have prevented us from giving the treatment that would have resulted in my son displaying those “norms.” By interacting with him as we did, and providing communication assistance where it was needed, we were able to watch as he began speaking for himself, using his own unique word arrangements and inflections.
Today, Jonothin has written poems and shared them with friends. He still speaks for himself and inspires all of us with the passion and intensity he brings to his dedications, and in return we join him in what he loves and continue to build the connections that helped him become who he is. As his mother, I am grateful to have the chance to walk with him as he navigates this and other parts of his life, and am glad I followed my first feelings and left ideas like those used in ABA out of his treatment plan. I love him for who he is, autism and all. I would never dream of trying to change him, only of trying to help him find safe ways of meeting his own needs in all parts of his life. This is the way of our community, the way in which we told ourselves we would treat one another, and the way which was so far removed from the interventions we received while in elementary school. It is what will, at the end of the day, bring us our greatest healing. Such a lifestyle may not be traditional, but it is the foundational part of the story of a community, mother and child, on their journey.