DIRT FROM THE ROOTS 9: AUTISM
TOPIC OF THE MONTH
THE AUTISM SPECTRUM
“If you’ve met one person with autism… you’ve met one person with autism.”
-Dr. Stephen Shore, Autism expert
I have been around autism, knowingly or not, throughout my entire life.
If there is one thing I can say for certain, it is that autism does not present similarly from individual to individual. I would argue that autism is sometimes one of the hardest conditions to identify due to the differences in presentation as well as the misperceptions of what signifies “autism”. While it is common to think of the condition in a way that frames only the individuals who are nonverbal or present with extreme symptoms, the reality is that there are likely hundreds of millions of individuals functioning with tolerable, less noticeable levels of autism that may not even realize it. While this is not necessarily pertinent— as we have covered, conditions that do not pose barriers to quality of life are not considered to be detrimental— it may help explain small “quirks” seen in people and give us fresh perspective on how to best suit society.
If you have read the last few months, this may start to sound like a theme– which is because it certainly is a theme– but for yet another condition: autism itself is not really the detriment– the challenge lies in living with autism in a world geared towards neurotypicals. The history of autism treatment is, bluntly, a harrowing and despicable one. While great strides have been made, particularly in the past decade, it is still a burgeoning perspective to see autism as a separate, respectable human experience rather than a condition that needs to be “fixed” via teaching neurotypical skills (which have centuries of proof showing their inefficacy).
Another perspective that I would like to begin with is that personally, I believe that autism serves as an irreplaceable lynchpin to human society. Unfortunately, it is also one of the more overlooked perspectives in history as far as societal perspective vs societal value.
Bill Gates, Steve Jobs, Elon Musk, and Temple Grandin are just a few current monumental societal figures that identify as autistic. But using modern information applied to historical accounts of behavior, there is a strong likelihood that Sir Isaac Newton, Albert Einstein, Charles Darwin, Thomas Jefferson, Thomas Edison, Nikolai Tesla, Wolfgang Amadeus Mozart, and Michaelangelo would be diagnosed with autism in the present day. On the creative side, Lewis Carroll, Emily Dickinson, Tim Burton, Stanley Kubrick, Andy Warhol, Dan Harmon and even Jerry Seinfeld have all either self-identified or presented as autistic. This list was actually narrowed to the most famous of names, it is far more extensive in reality.
So if really, anyone, takes a look at those names, you could see how it may quickly become confusing as to why autism is considered a “disorder”. My personal conclusion to this information is rather that society itself would not be nearly as defined, advanced, or anywhere near where we know it without autism.
WHAT IS AUTISM?
Autism spectrum disorder is broadly defined by the DSM to feature 3 symptoms:
Regular difficulties in socialization
Restricted or repetitive behaviors, otherwise known as “stimming”
Resistance to changes or restricted interests
While these broad categories are completely justified by the wide presentation of the disorder, a further inspection of each symptom may help to clarify how these basic descriptions can become easily misinterpreted.
Regarding Social Deficits:
A better way to look at this is that individuals with ASD are speaking a whole different language, and therefore neurotypical communication patterns are foreign and indecipherable. In my experiences working with autism, particularly nonverbal clients, it is very clear that there is a complex and defined intelligence and communication– just not an easily interpreted one. While individuals with autism must learn to “script”, or memorize responses that are deemed appropriate in neurotypical communications in order to better get around in modern reality, it is faulty to view this as a true “deficit” when considering individuals with autism simply communicate in a way that neurotypicals do not understand. This was made very clear to me in the 5 summers I worked at a sleepaway camp for children with social deficits (mainly autism): each year, a complete social hierarchy formed amongst the individuals, and though this looked very confusing to an outside neurotypical perspective, it was very obvious that the campers understood one another on an unseen level.
'Stimming' refers to repetitive physical behaviors that release energy and create relief for individuals with autism, much like stretching or other tension releases. VERY IMPORTANTLY, it is a crucial outlet that should never be redirected, as it is very beneficial in regulation and comfort for individuals. Classic symptoms include hand flapping, arm waving, tics, vocalizations, and other unusual or eclectic body movements. Less light is shed on the fact that stimming can also happen internally with thoughts, externally with patterns or speech, or even abstractly through perceptions.
Regarding resistance to change and special interest:
This may be the most straightforward description, as individuals with ASD greatly value schedule, structure, and predictability. Change presents a large unknown– whether on a large scale, such as moving schools, or at a small scale, such as a class getting out late and delaying the next activity. Interestingly, this is more connected to the lack of predictability in an already-difficult to interpret world than anything else. As far as special interests, individuals with autism do tend to hyperfocus on certain topics which they find interesting. While this does reduce interest in other topics- which can manifest into an array of social issues– the hyperfixation also allows for profound and unprecedented focus on topics which, as stated before, may have led society to things such as the Theory of Evolution, electricity, and even the iPhone.
IS IT AUTISM?
Autism development is the same as ADHD development covered last week: it cannot be “caught” or caused by anything other than genetic predisposition. While, again, environmental factors play a MASSIVE role in how the condition develops, everyone with autism was genetically predisposed to the condition, and would have likely developed symptoms one way or another. The vaccine-autism controversy is therefore a moot point; any individual who “developed” autism after a vaccine would have developed autism regardless.
Identifying autism is becoming easier as we better understand the condition, and though it may present differently on a case-by-case basis, the symptoms are largely distinct. Social deficits due to “not getting it”, “not understanding”, “socialization not making sense” are key indicators of autism on all parts of the spectrum. This is important to separate from fear of socialization due to risk of negative outcome or traumatic socialization history, which would be viewed as a trauma response and categorized as social anxiety– though both conditions could also exist! ADHD and autism are highly comorbid and have many overlapping symptoms, but this is not as problematic in theory due to treatment options for the two being similar. Other socially-aversive conditions also exist, most notably schizoid personality disorder. The differences here exist in social motives: while autism is a foreign language that deters communication due to difficulty, cluster A personality disorders truly want to avoid socialization entirely.
THE CHALLENGING HISTORY OF AUTISM
But for as rosily as I can describe the condition as someone working in the modern day, the history of autism treatment is hard to hear.
Autism was not properly recognized until… well, in my opinion, autism is yet to be properly recognized. But until the late 20th century, severe autism cases were seen as either psychosis, schizophrenia, drug induced, or even demonic possession, and most frequently treated similarly to the same way that we now treat life sentences in prison. Autism was initially acknowledged as a subset of schizophrenia in the early 1900s, then by the 1940s seen as something that happened to “boys who were not loved enough by their mothers”. It was not until 1977 that a genetic link was discovered, and it would be another 10 years before the condition was officially separated from schizophrenia. In 1994, autism was officially recognized in the DSM, but broken into pieces as autism, aspergers (a milder form) and others. In 2013, these diagnoses were consolidated into the “autism spectrum”, which stands as the most current categorization of the presenting symptoms.
Historical accounts also seem to exclude pieces that could have potentially normalized modern autism presentation; we glorify people such as Thomas Edison for contributions to society, but say nothing more. In full picture, Edison was frequently reported to have “outlandishly volatile temperament, poor social skills, and severe lack of awareness in most facets of life”. The convenient removal of these less desirable details create a false perception of what we call “genius” that, while is true in part, alienates the rest of the population with autism. Individuals with autism are extremely restricted by societal constraints and often prevented from living a full life because of this; it is not hard to see the frustration of discoveries from individuals with autism leading to advances in neurotypical society while autism itself was still being treated as, essentially, sub-human.
Another example exists in the commonly-stated factoid that “Einstein got bad grades in school!” This is true– he also was reported to have a hard time in social situations, strongly disliked being touched, and was extremely structure oriented. In fact, Einstein himself stated it was his persistence, not his intelligence, which led him to his groundbreaking discoveries. Though we convert this into a colloquial platitude about determination in earnest, a more fitting implication would be that someone who does not function naturally in an environment is a “fish out of water” rather than lacking in skill or competence.
PROMINENT AUTISM TREATMENTS
Modern autism treatment is indeed getting better! But the process has been slow to say the least.
Initially, shock therapy and changing diet seemed to be leading the way as far as treatment. While the former did not show positive results, the latter does at least have some validity, as autism is highly comorbid with food sensitivities and digestive health issues. The next approach towards treatment focused on the blame of parents, as removing autistic children from parents to “more loving ones” was thought to promote restorative changes. Again, this was not effective as it did not aim to help actual deficits— and completely overlooked the root. The next treatment wave was heavily focused around punishment, as by this time autism had developed into a “behavioral disorder” which could be “fixed”. This obviously caused great harm and trauma to individuals with the condition, and luckily most of these “treatment” options have been banned since 2016. After almost a century of failed attempts to “correct” a “maladaptive behavior”, it appears that we as a society have finally started to see autism as a separate human existence that actually does not need to be corrected, only adjusted for.
This leads to the controversial but most prevalent treatment of the current day: Applied Behavioral Analysis, better known as ABA.
There are two views on this method, which is simply using CBT to encourage positive behavior and discourage negative behaviors. Though perhaps a crude comparison, it is very similar to what we would expect to see when taking our dog to be trained: children work with specialists and are rewarded for desirable behaviors, ignored or sometimes punished for undesirable behaviors. This has the most evidence-based success statistically: a whopping 90% of individuals who engaged in the initial ABA treatments showed “improvements in socialization and cognitive realms”.
But of course, all of these statistics are measured from a neurotypical lens, and as may have been inferred from description, ABA essentially takes autonomy away from the individual being treated. ABA can be incredibly harmful, as it can create an indoctrination that unfortunately may fail to incorporate autistic needs in favor of more neprptypical behaviors. Many common ABA “desired targets” encourage behaviors that are designed not to enhance the quality of life for the client, but rather reduce the eccentric and unorthodox behaviors which are not deemed “appropriate” in modern society. While these strategies are certainly helpful in some cases, such as teaching a child to keep their clothes on in public, understanding caution with strangers, and similar safety measures, these messages can also be successfully communicated without conditioning children to suppress their emotions, expressive behaviors, or alternative communication methods. Some ABA methodologies also encourage reduction and may even punish stimming behaviors– which we now understand to be akin to trying to get a dog to stop wagging its tail.
While ABA does create a more socially-acceptable presentation for individuals with autism, we have to also consider who truly benefits from a non-consensual modification of our own behaviors under context of what others are perceiving as “acceptable”.
WHAT DOES WORK WITH AUTISM
Treatment of autism requires a unique perspective.
Foremost, the wide range of presentation makes this question irrelevant from a broad description: I have probably used over 100 unique strategies with autism in my career, and what is wildly effective for one individual may be completely useless for another, even at similar levels. In my experience, this can be as simple as tapping in synchronized rhythm with a nonverbal client and as complex as playing “The Sims” video game to teach life skills and give visual understanding of basic needs. I think a better question to ask when considering how to approach an individual with autism is “what does this person relate to, and how can we speak their language?” While this could seem impossible in situations with limited communication ability, this again stems from the idea that neurotypical communication is the only option. All this considered, here are some generalizable “tips” for interacting with autism.
The first question I ask is whether an individual wants to socialize. While a very common situation I see is a parent wanting their child to build social skills, a very common oversight to this request is forgetting to ask what an individual with autism actually seeks socially. While many individuals do indeed desire social connections, this likely looks very different than neurotypical socialization, may be much less socialization than “typical”, and may be framed from a different set of needs. While explaining social rules is obviously helpful, helping a client understand their preferred communication methods with these tools is a much more holistic and helpful way to apply our knowledge of autism and socialization.
Emotional dysregulation is dysregulated. A common feature in autism is intense, sometimes explosive emotions that happen regardless of social environment and may occur at any time. Giving an individual time and sensory release options will help them to reregulate, and the explains why any sort of punishment or overstimulating responses often just exacerbate and prolong the dysregulation. It is important to remember that just because a situation seems to be over-escalated does not mean that the emotional response is not valid.
Giving choices and structure are a golden combination. For the 5 years I worked summers at a sleepaway camp for kids with autism, these two variables were the key foundation to any other activity. Every counselor had a physical schedule for campers to view whenever they felt the need for more predictability, and questions were often asked in choice form. Even as simple as framing an activity as “we can go straight to the next station or we can do a breathing exercise before going to the next station” gives an individual autonomy over a situation without a common criticism of too many choices becoming confusing. Most importantly, it is paramount to make sure the individual is feeling considered in any type of treatment— learned helplessness, uncertainty around role, and difficulties in communication can very easily create barriers to that individual expressing their wants and needs.
Consistent awareness of differences. Inherently, no two humans can truly know what the other is thinking, feeling, or perceiving. We often bridge this gap (partially) through communication– which is a large reason why we have so much trouble treating conditions which alter communication abilities. If we can be presently aware that we are probably not able to notice where we are being unclear, it can lead to more creative and open-minded strategies to try and bridge the gap from the perspective of autism rather than impose neurotypical patterns that potentially suppress that individual’s perspective.
Two areas that seem to frequently be met with confusion are in realms of literal thinking and confusion around tone. Individuals with autism often have challenges interpreting sarcasm or metaphors due to a lean towards more literal interpretation, and sometimes can have issues interpreting tone of voice, which can be seen both in receiving and offering communication.
A NEW PERSPECTIVE ON AUTISM
Here’s a simple (albeit flawed) way that I can most precisely summarize this concept:
Everyone is somewhere on the autism scale from 0-100. That’s right: at risk of potentially countering everything just stated about the importance of viewing autism as a separate reality from a neurotypical one, life and mental operation is ultimately far too complex and nuanced to ever categorize in the way our brains find most comfortable. While not every single human has autism, symptoms such as social rule confusion, special interests, and particularly sensory issues may present as barriers to a non-diagnosed individual due to a mild, manageable, overlooked autism diagnosis. While this is mostly a personal observation through my years of working in mental health, I believe it implies that rather than trying to impose a neurotypical world on autistic individuals, the neurotypical world would actually greatly benefit from integrating a more autistic perspective. We are already seeing this happen in many ways– from macro-level application of technology systems down to the recent popularity of fidget spinners and similar sensory items, we are closer to combining neurodiverse culture to the incumbent one than ever before.
I appreciate the wording of a therapy goal that a client with autism once described to me:
“I would like to understand how to use the social rules to my advantage while still being myself.”
While there is great advantage and safety in understanding the social contract, it is easy to let this idea snowball into a need to conform, mask, and compromise one’s identity in the process. Realistically, the world is not going to shift from an overbearing neurotypical ideology anytime soon. This being said, it is those who operate outside of the construct which seem to make the largest societal advances. Perhaps more recognition of this condition and understanding that treatment from the scope of autism benefits not just the individuals themselves after a long history of not getting considered, but also society at large when we take more unorthodox and unique strategies.
In the end, we have gone from a 2000 statistic indicating autism occurred in 1 of every 150 individuals to the most recent 2018 statistic indicating autism to occur in 1 of every 44 individuals. Perhaps even more so than mentioned last month regarding ADHD, this current statistic is probably more realistic to objective truth due to reduction of stigma and increase in understanding around the condition. Jumps like this are simply incomparable, and require great critical attention to the way that we treat not only the condition, but society as a whole.
WHAT’S COOKING FOR NEXT MONTH
Next month, Nick will discuss what he feels is one of the most important areas of mental illness to shed light on in personality disorders, and all of the complexities that come along with them
BONUS: IMPROV GROUP NEXT MONTH!
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