How this specific question led to the birth of this foundation

I would like to make it explicitly clear that the concern I feel regarding this trend has absolutely nothing to do with individuals embracing a different identity/reality. If there were to suddenly be a trend on social media where individuals were announcing they had come to the determination that they were in fact unicorns, my response would be “you go out there and be the best unicorn you can be!”. My concern lies in regard to the ensuing ramifications that ultimately will take place when people take a relatively rare and heretofore very much low visibility pervasive developmental disorder (which is in fact what ASD is categorized as, meaning it is something that an individual is born with, diagnostic presentation varies somewhat,  and there is no specific cure for, there are currently only  means of adapting and learning coping skills) and utilizing it as what appears to be a new, trendy personal identity, and in doing so are creating and perpetuating a very false and idealistic depiction of a very serious disorder that I would highly doubt that any individual on the spectrum (or their families in cases where the individual is on the more profound end of the spectrum and unable to offer their perspective) would in all honestly be capable of expressing a sense of pride in being born with or supporting and caring for  a loved one with this particular disorder. I have given the results of assessments to parents and then held them as sobbed in despair, because they understand that the realistic future for their incredible and amazing child is going to very different from what every parent wants for their child. For many of these individuals “different” isn’t necessarily bad, but what is probably the harder pill to swallow is that their child is going to have to struggle a lot harder to do the same things other kids and their families don’t even think about typically. 

My first experience with an individual with profound autism was while doing an internship at an inpatient psychiatric facility on the child/adolescent unit. I met a seven year old who was nonverbal, required to wear a high density foam helmet to prevent a TBI when this individual would repeatedly strike their head into walls or floors or other fixed objects, was not toilet trained, and had been handed over to grandparents to raise because of the severity of the disorder and the inherent stress and financial and emotional toll it took on this child’s mother was too great for her to effectively handle. The elderly grandparents were unable to control this child’s behavior, however the child did not qualify for a permanent placement, so the facility was essentially a revolving door for this particular individual. Which is quite the sorry state of affairs. Which may have been why I was so drawn to him when he was there when I would be spending my time essentially with zero direction or any specific purpose aside to essentially provide documentation that I had spent x amount of time to fulfil the requirements of my internship. Or maybe it was the fact that he was one of the youngest children on the ward, which I gravitate towards typically, or it may simply have been something far more inexplicable. Regardless, I wound up spending the vast majority of my time with this child. 

I understood the essential concept of profound autism, and understood that he was very much in his own little world and when uninterrupted, was more often than not, fairly content there. I also understood that any form of interaction would be very limited, and thus I had no expectations. After having observed him for several different periods of time, essentially allowing him to get acclimated to my presence, as well as determining what his preferred activities were (which WAS blocks. Any form, no variation, simply towers. This was the extent of my own skill with blocks, so it worked well.)

I don’t recall starting with any specific intention, however, I began to start to build block towers in close proximity (very careful to have a separate supply of blocks so as not to be taking what he likely considered to be his, which would in all likelihood have been viewed as a rather egregious sin). I simply built towers like he did, but it was not long before he began to notice. And, since they were not his towers, like many small children, what could possibly be more delightful than knocking them over? And rather than responding with a negative response, I would simply make a very exaggerated face of surprise. And this was how we began to “play” together. The more he would destroy, and my reaction remained predictable and neutral if not entertaining, I finally started to see the rare smile cross his serious little face, and on the best days, he would reward me with laughter. However, the absolute most remarkable, beautiful moment was when I had come for my scheduled hours, was looking for him, after confirming that he was on the unit. He may have been being attended to by the nurse in his room,  but I decided to set myself up in the typical corner where the toys were, where he always knelt building his towers, and was in the midst of building one when I felt the slightest bit of pressure on my shoulder, akin to having a butterfly light briefly on you, which I viewed with the same sense of wonder and awe. I slowly turned my head, and from my position on the floor we were at about eye, level and I received one of the most truly magical, rare, and beautiful gifts I could have been given entirely unexpectedly: not only was this child, who was not one to appreciate physical contact as is typical for most individuals with ASD, but I was gifted with a moment of looking directly into clear blue eyes, and he was smiling at me. All things that were as likely to happen as going outside and stumbling upon a unicorn amongst my herd. I realized that I had, essentially without having ever consciously set out to achieve anything in particular, by allowing things to develop slowly, on his terms, this little boy who trusted nothing or no one, had built a connection in his own very specific way. Something that even in my youth and inexperience, I recognized how tremendously rare and sacred that brief moment was.  More than a quarter of a century later, that memory still brings me to tears, and I consider it to have served as a moment that would ultimately influence the remainder of my professional trajectory. It also, in hindsight was one of the singular most beautiful moments of my life. 

My second experience with a young woman in her early twenties I met doing a practicum during my first training in graduate school. While she was in many ways an absolutely delightful young woman, she was a permanent resident of a residential facility where she required round the clock care, monitoring, and some fairly extreme requirements to deal with particular areas of life most individuals take in relative stride. Given that this woman was post-pubertal, she was menstruating, and the sight of her own blood, assumedly from that location in particular,  was so incredibly distressing to her that she needed to be on a hormone that would  prevent her from menstruating. In and on itself, an injection required the restraint of multiple, large, likely from her perspective - extremely terrifying, men. Speaking with her case worker, I was told that the physicians were very uncooperative regarding taking her specific needs into consideration, and initially refused to prescribe this medication (which has been used with few side effects for at least two decades, and has been utilized for a variety of medical reasons from birth control to chemical castration in sex offenders) in this instance for the singular and humane purpose of relieving what was an incredibly distressing experience for this woman every month, without performing a full internal gynecological exam. One that the physicians refused to breech protocol (despite the knowledge that in order to do this “routine” procedure, full sedation would be required in order to prevent even greater traumatization). Sedation would not be permitted  since that was outside of the realm of “protocol”. Ultimately, after repeated attempts on the part of medical staff (which undoubtedly continued to significantly retraumatize this poor woman with each failed attempt) after several of these inhumane, by my way of thinking criminally unethical, and unnecessary attempts, the physician finally conceded to give the prescription and chose to forego the pelvic exam. However, this is likely one example of thousands of times that the rights of the individual and what truly is best for them deviates from “standard procedure”.  However, standard procedure was viewed as being of greater importance than honoring either the particular needs of this individual or the ethical imperative stated in the Hippocratic oath to “first, do no harm”. While this woman may not have been able to articulate it verbally, a considerable amount of harm was done. Which leads me to ponder the question: if this were an individual who had the ability to advocate for herself, would this still have been the same outcome? I can’t possibly know, but I would imagine that it is well within the realm of possibility that it might not have. 

Aside from having survived that particular battle, during my interactions with this young woman, I witnessed an individual who was in constant motion, rarely able to express her needs in a manner that was understood by the staff, resulting in frustration to all parties involved. Typically this frustration was one of potentially many reasons she was prone to bouts of clawing at her flesh, slapping herself in her face, headbanging, and many other behaviors that were at best challenging and likely distressing for her caregivers. At worst, expressions of terror from uncontrollable circumstances of being a member of a world that is not sensitive to the needs of those who have nervous systems that are both highly sensitive to the point where things most individuals would no longer perceive as anything aside from white noise, and long ago developed the ability to filter out are received by the individual’s hyper-attuned senses, as a direct threat to their being.

An illustration of this took place when I had been at the facility for several weeks, primarily for observation. This resident  was one of the individuals I had been assigned to observe. It was a beautiful spring day, and she wanted to go sit outside (which was allowed with the caveat that someone acting in a staff/ability to provide assistance capacity, be with her). She was deeply absorbed in a magazine (not the way you would be likely to observe someone reading a magazine, she was holding it horizontally and flapping the pages across her face, occasionally looking at photos that caught her interest, but absorbed in her own way) when there was a loud noise from the nearby freeway, causing her to spring from her chair. She had become familiar enough with me at this point and we’d developed a bit of a rapport; on her “good days” she would seek out my attention, including once adamantly grabbing my wrists to convey she wanted me to stand, because the radio was on and she loved music and loved dancing. So I did my best, and while her response was laughter, it was well deserved in this instance, and something I had not witnessed her do before. Which is why that has become a very cherished memory. Which is what leads me to firmly believe her fear response  was both reflexive  and an attempt at comfort seeking.  She leapt from her chair, was directly beside me, and she grabbed a fistful of my waist-length hair. She then began to pull me toward the direction of the door (which would lock automatically for security purposes when closed, meaning that I had to ring the bell to be let back into the building).  I found the sound of its ring to have a significantly obnoxious and grating tone, so undoubtedly, it was far more distressing to her and certainly was not in any way soothing. Then we had to wait for one of the chronically overwhelmed staff members to let us in. I will never forget the look of shock on that staff member’s face: to find me standing calmly while this individual who was now whimpering and trembling at my side, clung fast to my hair. I simply but firmly explained that she had been frightened by a loud and sudden traffic noise, she had done nothing wrong, I was completely fine, she was not hurting me, and I was fully aware that she was not acting in any way aggressively.  This was nothing other than a significant fear reaction, but I would likely need some assistance to extricate my hair from her hands. Given that staff members’ apparent incredulity at my essential lack of reaction, I took that as a sign my calmness was less than common, even for someone who was in the mental health field.

Those are just a few snippets of illustration of  what profound autism looks like, and that is eons away from someone who is a) interested in social media and concerned about his or her online presence b) frequently seen in public places given that public places are neurological-panic- attack-inducing situations frequently  resulting in behavioral meltdowns and they are avoided whenever humanly possible c) would be able to state that if given an alternative, he or she would have chosen to be born exactly as they are, wouldn’t change a thing. Many of these individuals wear this DIAGNOSTIC label as a badge of honor. (While I believe that accepting individual differences, be they sexual, gendered, cultural or ethnic, are in fact things that are all deserving of individual and collective pride, which I heartily support). Simultaneously, I would under no circumstances encourage individuals with medical or mental health diagnoses to feel shame for having been assigned any of those diagnoses. While I realize it may appear I am splitting hairs, and that these are what many would be considered to be small, if not fairly irrelevant, details, the way we define ourselves greatly impacts the way we feel about ourselves, and the way others feel about individuals with certain identities. I personally have yet to meet someone who introduces themselves as “Hi, I’m Bob. I am prostate cancer. I am MS etc.” This is a mixed bag regarding mental health disorders, and the choice to state “I am” as opposed to “I have” frequently is dependent upon both the individual as well as the extent to which the disorder impacts the different areas of one’s life. (I have found it not uncommon to meet individuals with personality disorders in particular refer to themselves as “I am a borderline”). While a diagnostic label can be a relief for many, viewed as supporting evidence that they are not the only human person to walk the face of this planet to ever have experienced these symptoms, it also often brings with it a sense of understanding that “there actually is something wrong with me” and depending upon the situation and one’s perspective, particularly if it has been an ongoing struggle to finally receive a correct diagnosis or any diagnosis aside from “it’s all in your head/you’re too sensitive/you just act this way because you want attention”, it also creates a sense of order along the lines of “ok, now we know what it is, what do we do about it?”

Much of the severe behaviors demonstrated in these individuals is driven by sheer terror from something they often are unable to articulate as the source of their misery. Unless you either are very experienced in noticing what they are and thus capable of avoiding them, in many instances they are beyond individual control, particularly in a public setting and in that specific moment. Which makes it rather unlikely those triggers can be ameliorated aside from attempting to calm this individual and getting them away from that situation. Just as I would strongly doubt that someone with severe paranoid schizophrenia would have chosen to be born with that disorder, I equally doubt anyone would choose to live a life of frequent terror and discomfort coupled with an inability to articulate what is the specific source and thus gain relief from whatever particular aspect of their environment is so tremendously distressing. That would be the first half of my finding this new trend to be problematic.

The second reason is that individuals who have this disorder are seldom able to provide for their own needs, even individuals who are considered to be “high functioning” frequently struggle with the typical demands of a workplace environment, and being able to maintain consistent, adequate employment is a legitimate concern.  Many of these individuals will live with family in one way or another their entire lives if they are fortunate enough to have this opportunity. Many other individuals are not so fortunate. Which means that they are eligible for SSD benefits, regardless of whom they live with. The importance of these benefits has a different level of impact depending upon individual circumstance. However, if the number of individuals who purport to have this disorder continues to rise, it will inherently no longer be considered a disorder requiring these societal support systems currently in place, nor will there be enough of that money to be granted to those that truly need it. This is why I have very strong feelings regarding this trend. Unfortunately, I apparently am either looking in the wrong place or I am one of the few who is focused on what the ultimate consequences are likely to be. This is a vulnerable population unlikely to self-advocate. Or to put it in a different perspective: they are much more likely to be victimized. In all manner of ways. There has been much research conducted on this, although I cannot off the top of my head provide you with specifics, which would in all likelihood be a misrepresentation due to the fact that so many of these individuals are victimized for the singular reason that “they are incapable of telling someone what has happened”. 

Those two individuals and my experiences with them are what have motivated me to speak out against what I view to be a widely accepted form of social injustice. I am advocating on behalf of those who do not have a voice, let alone a social media presence. I am able to relate to the experience of being victimized in a variety of ways, although I have not experienced it in the same way. I have, however, ultimately taken those experiences and allowed them to make me stronger. I am not only a self-identified survivor of many things, but someone who is no longer afraid to use my own voice to protest loudly and cry out in outrage for those who are not as fortunate as myself. I have metaphorically fought tremendously powerful individuals who have wielded their power and authority as weapons in an effort to silence me, because I was viewed as a threat against the “bad behavior” they were individually and collectively perpetrating. Yet, here I am. Doing the very thing they were attempting to prevent.