Over this blog’s time, there have been articles talking about autism. Those articles may or may not have painted it in a positive light, but it has been mentioned, and there is one reason for this, a reason that it has taken the past six years for me to come to terms with and embrace. This article will detail that reason, do its best to tie it into the mechanisms underlying several of our experiences, and connect what we now know about ourselves to our past.
Content warning for invalidation/minimizing of struggles and some strong language.
I, and others of this community, have already discussed in great detail the harms of what we refer to as ‘the behavior program’. We’ve discussed the fact that though the adults around us during that time of our life knew we were experiencing anxiety, their solutions failed to address it and in many cases actually exacerbated the very symptoms they were trying to treat. I now take this a step further and assert, without reservation, that the diagnosis that was given to justify the behavior program’s disregard for our emotions, Oppositional Defiant Disorder, was a mistake as applied to our experiences, was given carelessly, and shaped the attitude of the people around me when it came to school even after it was taken from our life insofar as therapeutic efforts to address it were concerned. I maintain that nothing that happened while we were supposedly being ‘educated’ was our fault, that being mislabeled with a condition we did not have was what caused our later experiences regarding plurality to be invalidated in action if not in word by people we encountered in the school setting, and that pure laziness on the part of whoever it was that gave the misdiagnosis is ultimately to blaim for the seed of distrust that was planted in the minds of adults around us. Something was going on, yes, but it was not deliberate and it surtainly wasn’t controllable on our part. If it had been, we wouldn’t have been in the program for six years.
I firmly believe that we are autistic, neurologically, not just in behavior, though our behavior is largely shaped by our neurology like anyone else’s. The autism framework describes, much more than Oppositional Defiant Disorder ever did, and, perhaps more importantly, even more than Dissociative Identity Disorder ever did, many experiences which, until 2016, I had been confused about, frightened of, and angered by. It explains why I locked onto many subjects over the years, and would become upset if someone would bring them up in a casual context; in my mind, they were part of me and to bring them up casually was to pull off a piece of clothing and leave a part of me exposed to the eyes of strangers. It explains why the people of the behavior program would tell me that I sounded rude while I was unaware that I did; I had no clue about what my tone was doing, and naturally did not believe them when they said things like that because I hadn’t heard it as they had. It explains why I copied the words of others from as far back as I could remember until the age of nine; I took pleasure from it, and had this been allowed to develop instead of being suppressed I could have turned it into a skill by which I could learn the right things to say in different situations, which is something I struggle with. It explains why I felt the need to bounce or walk on my toes when I was happy or excited, and why not doing so made those emotions vanish; the correlation between my decline in positive feelings in middle and high school is directly related to the need to be careful in the hallways and suppress this urge and its associated action. But perhaps most of all, it explains why I could not tolerate grey areas, most evidently, in the context of this small corner of the internet, when it came to plurality. Oh yes, everything in my life makes a lot more sense now that I know what’s really going on with our brain.
I only wish I had known sooner, and that the recommended treatment for autism was not ABA therapy, which we got anyway thanks to the behavior program. I can’t help but wonder sometimes what things would have been like if they had also known what was going on, and then I remember how much of the outward signs of our being autistic the program’s directives attacked and forced into hiding anyway, and I am greatful it was not labled for them. As things turned out, we had to learn to mask that part of ourselves as a result of what the program was doing, so I don’t think awareness of what was going on with us on their part would have made things any easier to tolerate. Our meltdowns, need for rooteen, and identification with the things we would often bring to school with us, which were sometimes taken away for the day, among other things, were frowned upon, along with a supposedly rude tone, as previously mentioned, any objections to the program’s actions, and anything else thought to be ‘inappropriate’ by a given member of staff. It comes as no surprise to me that there is a large group of this community who attest to having formed from such conditions, and I am confident that, for themselves, they speak the truth, though whether or not they formed in childhood as S claimed, rather than from my later realization and subsequent involvement in therapy that featured a lot of suggestion, is up for debate. It’s a debate, for the record, that I do not care to engage in. We are here now. We are autistic now; we were autistic then and it’s time we start living as such.
I think one of the biggest problems with being blind is that the idea of there being more to someone’s behavior is frequently dismissed. This fact of my life, and the lazy diagnosis of Oppositional Defiant Disorder given to my parents in 2008, which I remained in treatment for on a continuous basis until 2013, formed a convenient container into which any and all undesirable traits could be brushed, passed off as symptoms of the illness, and extinguished by supposedly positive means. Before that, my family’s impatient approach to my needs was enough to mask my difficulties; after all, what isn’t noticed isn’t addressed, and what isn’t addressed, in my case, I either avoided or learned to suppress. I have very little memory of my school years until the third grade, so I can’t testify to what it was like back then, and all the documentation I’ve managed to obtain says things were going well. Unfortunately for the case of those around me during that time, I doubt that conclusion’s accuracy, because why would I have felt the need to throw myself down onto the floor kicking, crying, screaming and rejecting every attempt to comfort me that adults made if it was correct? I think whoever diagnosed me in 2008 missed a lot of things, relied on information that only showed part of the picture, and mistakenly assumed that part to be the whole while failing to look deeper into much of what they were told about me, or what they thought my interactions with them said about my ability to relate to others. I think that failing on their part was the first step to us finding ourselves in a treatment program that wasn’t really treatment at all, and which we now feel the need to address as if it was trauma.
There was no question in anyone’s mind that something was going on that was causing distress to everyone involved, including us. But the problem was that the lable given to the outward presentation of those struggles happened to be complete crap, allowing distress to be ignored or glossed over with band-aid solutions that focused on the present moment alone or which encouraged cognitive change at the cost of my connection to my authentic self, which was my autistic self. Autism contributed to a lot of my problems in school, yes, but its impact would have been far less had I not found myself in an environment that was solution-focused, forward-moving and generally insistent that I separate myself into parts when there were and are other options for addressing what I was bringing to people’s attention (that environment being, of course, the behavior program). As a person, I needed to react to these directives to be inauthentic in the way that was the most natural to me at the time, and as a child I was not allowed to do so. As an autistic person approaching what the program did from the angle of being required to mask said neurodivergence, I have a huge problem with that. To put it in a way that more deeply expresses how I’m feeling about this: the situations the people of that place created, blocking the catharsis I desperately needed and then punishing it by the removal of tokens when it tried to happen anyway, were nothing but Suttle abuse, and the fact that I objected to it and was ignored makes me all the more unwilling to forgive those who fostered it. Again and again I will say the following: they knew we were suffering through what they were doing and they chose to do nothing about it. A profession that makes those practices a part of itself, regardless of the lable given, or not given, to a person in justification of said practices, deserves to be called out for doing so.
That calling out also extends to the argument that I am not autistic, just blind in a sighted world and experiencing all of the side effects thereof, simply because the argument itself is inaccurate. My willingness to put up with it is all but nonexistent, and while I respect people’s right to their own thoughts and the expression of them, I will forever disagree with their assessment where my neurology is concerned, because my own experience tells me things that contradict that line of thinking. If I had simply been blind in a sighted world, why were my experiences so different from the two other blind peers I grew up with, and why did I struggle all the more when I visited a school for the visually impaired for a week? Why did I still find my peers there difficult to relate to, even though we shared the experience that supposedly was separating me from sighted children and teenagers? The social and environmental barriers were basically gone when I was there, and the same could be said for the virtual math class I was taking through that school when it came to the tools needed to have the same chances as everyone else where blindness was concerned. They did everything they needed to as far as modifications for visual impairment and I still struggled, not because they were bad teachers but because outside of settings where I could be prompted time and time again in what to do next in a given series of steps, I wouldn’t know what to do. It got to the point where everyone but me would come back with homework to turn in. I highly doubt blindness is to blaim for that, and I know for a fact that I was more than willing to try to do the tasks assigned to me, as evidenced by the many math-triggered meltdowns I had all the way through high school.
Regardless of people’s good intentions in reframing my experiences, I can say with confidence that I was delayed in my ability to accomidate the full spectrum of my own needs because the blaim for any and all problems I was having, in school in general, was put back on me once blindness was accounted for. I don’t appreciate that, and neither do any of the other members of this community. If I haven’t made that clear before, I have now. To add to this stupidity, the first person to ignore my suspicions about my neurology was S; a professional in her field, who should have known to take all ideas seriously, willfully attributed the difficulties and new sensations I was experiencing as I reconnected with community members to anxiety caused by being blind in a vision-focused environment when I had a strong case for her conclusions being wrong. Her view was that a lable would potentially hinder me, an idea that comes off, to me, as another excuse to dismiss concerns and redirect outward signs into something more socially acceptable while providing the person experiencing said redirection no grounds upon which to object to it. She was more than happy to give me a lable of anxiety, which nobody in school ended up taking seriously; in fact it was so non-impactful that it makes the idea of an autism diagnosis hindering me all the more silly-sounding. At least if I had known I was autistic at some point in the last six years, I would have had a foundation upon which to stand as I refused the suggestions for more socially tolerable stims that were given so carelessly, and from which I could question the lack of answers she, in hindsight, so obviously displayed when it came to the things many of the other community members were doing. I probably wouldn’t have been so quick to accept L’s rejection of my suspicions either, a move he made despite stating himself that he was not qualified to make or reject a diagnosis of that nature. Most importantly for the subject of this article, though, I wouldn’t have fallen like a dead leaf into the trauma framework that overran our lives until 2020 had I been allowed to explore my autism, and that is what makes me angriest about this whole thing.
The trauma framework, among its many other flaws as related to our case, failed consistently to explain the causes of the behaviors I felt as though I had to separate from myself, though it tried its best to explain that I did, in fact, feel this need. I will agree with it insofar as the fact that yes, I did, but its inability to answer the question of where these behaviors first came from to a degree I am satisfied with is where I draw the line. S’s explanation of literally everything I brought to her attention, including things I associated with autism such as walking on my toes, skipping and jumping down the hallways when excited, unawareness of my tone of voice as mentioned above, difficulty interacting in social situations, and other more classic tendencies such as The intense focuses on particular topics I showed even as a child and the flopping on the floor when I was upset that I often did in that time, pointed again and again to our history with no regard for anything else. Some of these attributions I can understand, for example, social struggles could mean a lot of things, and flopping on the floor could as well, especially in children, but other things I was mentioning to her should have given her a clue that her conclusions were off. I highly doubt, for example, that I, myself, would spend hours recording ambient sounds around me onto tapes , as a 4-year-old, as a trauma response, or that I, at age 6, would be traumatized into reenacting a highly positive series of events I had seen in a movie for hours at a time while enjoying the activity for no other reason than the fact that I liked that movie. there is such a thing as reenacting trauma through play, but the feeling I had when engaged with recording was the same one that followed me when I reenacted that series of events, and now is the same one I get when thinking about other things I am deeply interested in. I’m not in situations I would see as traumatic anymore, and I know for a fact that I was not recording or focusing on movies to escape even when I was in less than ideal circumstances. I think both activities I’ve described here, and other passions I’ve had over the years, are better described as autistic special interests, and that is the way I view them today.
Other things require far less examination before the explanation for them which was provided by the trauma theory begins to fall apart. It is clear to me, as it has always been on some level, that walking on my tiptoes, skipping, and jumping, cannot be explained by that framework. I did those things before the behavior program, and I did them despite it, and all the while they were expressions of happiness, not of fear or anything else like it. I preserved them, and other things, through the creation of others, for that reason. Would I have done that if they were instead connected to trauma, given my tendency to avoid things I disliked? I don’t think I would have. As far as those people who would attribute these unique expressions of happiness to me simply being quirky, I will say this: I wouldn’t connect them to being autistic at all had the reaction to not doing them, as I found out first-hand, not been a sharp decrease in that happiness, as though walking in a more typical way sent a signal to my body that I should be sad. As things are, I haven’t explained that link well here, and this is not the right place for that explanation, but these behaviors were a part of my particular autism profile, and I’ll get to why I think that in a moment.
Let’s talk about the supposed tantrums we used to have. There are actually two angles I will approach this from, one of which has to do with the more traditional autism meltdown and the second of which has to do with the need to physically release our emotions that was present for our entire life. First, I have no doubt that we experienced meltdowns in the classic sense of the word, due to overwhelm in some area or other, but my first memory of these wasn’t until 2016, when we were open to the concept, though this isn’t to say that we did not have that experience, only to say that if we did, I do not remember it. What we do remember, and remember quite clearly, is struggling, not to hold in meltdowns but to be allowed to let them out. I have no idea whether or not they would have been overwhelming to me if I had not had to engage in that struggle, but I know that the view I now have of them was a direct result of it, and that preserving that view against the will of what seemed to be the entire world was Vivien’s origional task, and continues to be mine after her integration. I use the term ‘integration’ vary loosely here. I will not hesitate to restore her to herself and stand beside her as she defends a process I agree is 100 percent necessary for our continued wellbeing in the event that such defense is called for.
That leads me to the second angle. As a direct result of the behavior program’s insistence that I stay calm despite my body’s need to release emotions in physical ways, and their willingness to force the issue, I am perhaps more aware than I otherwise would have been of times when such a process is needed. I ultimately have come to view these moments as necessary, even if exhausting, parts of self-care. That view is the reason I’m in deep feeling therapy. It’s also why I don’t subscribe to many of the traditional views of emotional regulation. For me, the idea that I need to ignore the signals that my own body is sending me is dysregulating. I had a huge fight with S over this, and that is what basically ended our sessions.
I tie that view into autism because much of my distress was caused by things feeling wrong to some internal sense, with auditory sensory issues only making themselves known, at least to me, when I began to notice my own responses and go through puberty. The trauma, then, as far as the behavior program, was not in the meltdowns themselves, but in being asked to ignore that inner sense and function anyway. If that inner sense was a result of trauma, given that we famously avoided things we disliked, wouldn’t we have gladly taken all of the avoidance-based directives given to us by the program? If we were traumatized before the program, and feeling the need to express ourselves in such a physical way because we had no other way of getting our messages across, as S insisted was the case, wouldn’t we have had all the more reason to accept the interventions given to us, which included, in theory, other things to do in place of those behaviors? Would we have had such a visceral need to get away from the exaggerated breathing sounds people would make in an attempt to get us to follow along with their calmer rhythms, only to be unable to tell anyone why we reacted that way to the noise? At this point, the argument could be made that we did not feel cared for or listened to, and that our rejection of the help, in that context, was understandable because we were traumatized, etcetera. But I’ve been out of that closed-circuit loop of endless trauma focus for a while now, and I still have those reactions even from people I feel cared for by. They are sensory in origin, and they are some of the more unusual sensory reactions I have. Maybe, when I’m not so angry that my concerns weren’t taken seriously by people who should have given a shit about them, I’ll write a post about that, because it really seems like some apparently scientific fields need the information.
What else have I left unaddressed? We’ve established that skipping, jumping, and walking on tiptoe were expressions of happiness; we’ve likewise established that meltdowns unfolded in a somewhat unusual way for us because of autism’s role in my processing of the demand that I use coping skills in their place, and that intense interests were joyful, not fearful. Oh, right… I haven’t talked about the part of autism that leaves someone having trouble with back and forth communication. This is where things get complicated. S did have room to say that trauma was responsible for that struggle – or at least, she would have if she hadn’t also been contending with the side effects of the behavior program on top of whatever other history could have contributed to it. The thing she wasn’t counting on was that while my family didn’t engage with me much, and I didn’t feel like I could share much with them as I was growing up, the same could also be said about my peers, because the interests I had were things that they had either not heard of or knew only a very small amount about. Yes, a lot of them were vision-based in nature – social media, for example, features lots of photos. But on a more basic level I struggled to be included in conversations, even though I turned my face toward anyone and everyone I heard speaking and greeted them as I was able to. There isn’t much someone can do if they’re not responded to.
If I had been traumatized in some way before the behavior program and developed social difficulties in terms of relating to people as a result of that history, the skills training that was a part of said program would more than likely have compensated for it, in theory. It didn’t, even when I participated and wasn’t feeling like I had to fight the lessons. Some of the concepts made no sense to me until I was much older; respect, for example, was a concept I only understood because I was able to get around my instant reaction of disgust to the word and look it up on Google in 2021, and the definition I found was entirely different than the one I understood to be true. I could make the argument that the teaching style of the program itself was what caused a lot of the problems, and think that this might have been the case, but it still doesn’t account for why, even as a child, I needed to know why I was being asked to do something before I did it, and what the reasons were for particular rules, something which was also marked as undesirable and subsequently nearly trained out of me. If I had been traumatized in the ways S had thought I was before the program, and these caused so many of my autistic tendencies, then why was that need present? How could I somehow feel safe enough to question directives, and how in the world was it that my biggest problem with complying was understanding the reasons behind why I had to do so rather than anxiety about exposure to something I found intolerable? Both of those things can exist in autism, but I haven’t seen much about traumatized children needing to know why something was being asked of them, let alone questioning the underlying assumptions about children and adults that define many of these expectations of compliance.
If the social skills training that was a part of the program didn’t work, and my social difficulties were nevertheless still caused by trauma, then wouldn’t exposure to non-traumatic, behavior program-free environments, over time, have reduced that struggle? So far, it hasn’t, and while I’m willing to give this more time and a wider variety of settings to see what happens, I highly doubt much will change until or unless I find environments that 1, aren’t like high school, 2, aren’t the behavior program and 3, aren’t going to tell me that all of my problems are my fault in some way because I’m the sick person or the one lacking in skills. If it really is my fault, and yet I’m doing everything I know to do, either the trauma theory is broken, or all the people around me are just bad at communicating somehow. Seeing them talk to one another, especially in school, I doubt the second option.
If trauma was behind my problems with interacting with my peers, as S claimed was the case, where was my intrest in what they were doing? Wouldn’t I have at least had a moment or two of intrest in trends, social media-driven or otherwise, when I reached high school and all possible sources of trauma, save for therapy, were no longer a factor? Wouldn’t I have tried to join my sister on her late-night adventures, or done anything even slightly risky? Yes, I was dealing with a diagnosis that I took vary seriously because I thought I had to, but that should have clued someone in; hell, the fact that from the ages of 12 to 15 I stayed in a committed relationship with the same guy should have alerted someone to there being more going on than just a rough past.
The evidence for my being autistic kept on piling up when I recognized why some of the things within CommunityBelonging were happening, starting, at the earliest, with the need I felt to save those parts of myself that others attempted to extinguish. I had, of course, done this before, even in elementary school, by learning to move myself into different positions or engage particular muscle groups in order to change how I was feeling, most often to stay angry so that manufactured guilt brought about by the misplaced blaim of the behavior program couldn’t sneak its way into my self-concept as often. Being with the man I was with from 2012 to 2015 distracted me from needing to do this kind of preservation, because I could come home to him and trust that he would be there and listen to what I had to say, but after he left it was only a matter of months before my need to preserve came back, driven, in part, from the pressure I felt to give up those aspects of myself that I had discovered while I was with him. When my nearly joining a cult resulted in there being other aspects formed which I was also encouraged to let go of, and I realized that there would be no replacements of those by other activities or things to look forward to, the creation of characters followed, not only preserving all of the elements of self I didn’t want to lose, but also giving me something to enjoy at the same time. I relate this preservation instinct to being autistic because of how wrong it felt, once again to that inner sense, to not do so, as though, by use of my body and mind to preserve those aspects of myself, I was avoiding a sensory discomfort known only to me and anyone else who experiences it. Yes, S did have grounds to say that the preservation instinct was a result of trauma, and she may have even been right. But the fact that I was as concrete as I was about what I would and would not allow to be taken from me, and also about what constituted that taking, despite never having been given the words to express the concept until a couple of years into the program, looks like another manifestation of underlying autistic rigidity to me because it didn’t respond to people saying things like, “You’re allowed to have feelings, but you need to express them appropriately.”
So much of what I did revolved around what was wrong and right that I’m honestly surprised the misdiagnosis of Oppositional Defiant Disorder lasted as long as it did. By the time I created some of the others of this community, my determination not to let anyone else treat me as that diagnosis had allowed the behavior program’s people to had grown, to the point that shortly after 2016 began, I had created the first community member I knew of who would go on to embody parts of me particularly trampled by said program. When that creation had taken place and the first split, that is, the first birth of a community member from someone that was outside of my conscious input, had taken place, I made my dissision: if they were their own people, they could not get hurt in the ways I could, and that was an outcome I wanted more than many other things, so I did my best to let that independence happen. To the extent that I created others, at first, to preserve and then to protect parts of me, S’s ideas were correct, but no more than that, accept in the cases where individual community members themselves come forward describing their origins as rooted in our childhood. Beyond that, though, she missed the mark in attributing autistic behavior to trauma-born behavior, effectively, in my view, disempowering us when it came to meeting our actual needs. Autism is lifelong; trauma has at least a chance of being temporary, insofar as actively being a disruption to one’s experience of the world. There are degrees of accuracy of that statement, of course, depending on the person, but trauma, like autism, is a spectrum.
As far as I’m concerned, autism is not only the more accurate framework from which to view the experiences I’ve described above (from tiptoe-walking to flopping onto the floor and everything in between) but also a more realistic one, which would have allowed us to come into our adult life as a plural with a greater understanding of what things could be like and what kinds of challenges we might face in various circumstances. It might have not been all roses, but at least we would have had an explanation we weren’t constently struggling to accept because it would have actually made sense. At this point in our journey as an autistic plural, I, personally, have decided not to try to bother separating trauma’s effects from those of autism. I find it much easier to say that needs are needs and to meet them as best as we can in the moment. that shift has eased 99 percent of the previous stress we were contending with as far as plurality, autism, our past and everything else related to it. It’s amazing what the right descriptions and understandings can do to someone’s life.
That being said, coming to terms with all of these needs has been difficult to say the least. S’s dismissal of my suspicions did not help with this. The attribution of autistic traits to blindness and me just being unusual did not help with this. The behavior program’s attempts to impose a mask of normality onto me did not help with this. Knowing what was really going on, and finding a community of autistic people I could relate to was what helped with this. That is the bottom line; not labeling something does not make it go away, and saying it’s something else altogether when the evidence, including self-reported evidence, says otherwise doesn’t either.
I understand critical thinking when it comes to self-diagnosis, and I understand that by all accounts my childhood was far from typical in several areas. But to attribute all concerns to trauma, as S had done, to go through the DSM criteria for autism and debunk them 1 by 1 in reference to my spesific case, as L had done, even though both of them admitted outright that they could not confirm or disconfirm a diagnosis of that nature, and to attribute any and all difficulties either to blindness, or to me simply not trying hard enough, is frankly irresponsible and has a lot of potential to make people feel like crap about themselves, as I did. To my knowledge, nobody looked particularly hard at autism. Why not? Surely six years of little or no change, and some of the things I was saying to the people of the behavior program, would have drawn some kind of response from the medical professionals had they actually been paying attention. I guess the needs of children become second to gaining compliance and power over them when an ODD diagnosis is involved.
For those who will say my being autistic doesn’t matter because I function well: If I walk out of the house someday without my cane because I know the area around it well enough to do so, it doesn’t mean I’m any less blind, and no doctor in their right mind would end the diagnosis of my eye condition. The diagnosis of autism should be treated no differently from that. Why? Because autism does not go away, despite appearances to the contrary. Attributing autistic tendencies and traits to other causes does not change that fact. Just because I learned to hide my autistic traits and had environmental factors that either pushed me to do so faster and more frequently and ignored what slipped through those cracks, that doesn’t mean anything has truly changed, for myself or the others I share a body with. I do what I have to when I have to because I have to, nothing more, nothing less.
That’s not to say I’m unhappy where I am, though. I’ve known a lot of joy in the past year, and that joy comes from friends I’ve made in the autistic community, and the liberation from some of the lies the mental health system taught me. For the record, I don’t think the entire system is bad, but the experiences I’ve had with it have largely been ones I would not repeat. I have never been the kind of person to be happy with a partial explanation when other more complete ones are accessable to me, and the autistic community has encouraged me to seek these out. I’ve looked at the evidence for my being a member of that community and concluded that it is enough for me to identify as such. For the vast majority of its members, that conclusion is enough for them to also accept me. I appreciate that more than words can express.
Aside from embracing plurality, accepting my autism has been one of the best things I’ve done in my 22 years on this planet. I say that because it gave me a framework that offered some form of hope while also not telling me that I was a problem, or that I had problems. It’s been thanks to others like me that I’ve been able to understand dimensions of autism that have, to my knowledge, been untouched by research, and thanks to them that I’ve been able to stop beating myself up over things the behavior program thought I was doing on purpose. Physical expressions of emotion are critical parts of my wellbeing. I am not intentionally rude. I wasn’t a bad kid, and all of these things can be said for everyone else of CommunityBelonging too. We are autistic and we have nothing to be ashamed of!