By Archibald ‘Archie’ Brechin, Self-Advocate, Graduate Student, Rutgers University’s School of Social Work and Intern at the Global Autism Project

 

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“You can’t speak for my child you’re high functioning.”  “You don’t even know what real autism is.” “If my child were to write blog posts and articulate themselves the way you do, I would consider him cured.”  Most autistic self-advocates have heard numerous versions of these now-cliché refrains at least once during our annual retinue of conferences, book signings, speeches and other networking engagements. Such statements are usually made by disheartened yet well-intentioned autism parents who are worried that the neurodiversity movement does not adequately address and account for the needs and challenges faced by many individuals more “highly involved” or “severely impacted” than ourselves. Occasionally, we even hear similar rhetoric spewing from the deepest and darkest cesspools of cyberspace where disgruntled and/or reactionary pro-cure autistic bloggers (believe me they do exist) express their contempt and dismay at the gradual conceptual evolution of autism from societal scourge to simply another diverse manifestation of human neurodevelopment (and even occasionally the secret ingredient to prodigy). However, it is surprisingly more hurtful when this semi-vitriolic rhetoric comes straight from the very parents and siblings that we are trying to reach with our message of encouragement or hope.

These statements, regardless of the intent of the person making them, often inadvertently invalidate our own struggles and experiences by implying that we are “less autistic” simply because we don’t fit some essentialist Kannerian prototype of infantile autism. For many autism professionals and parents of highly impacted autistic children, our ability to integrate into society somehow makes us unrepresentative of the general autistic population even if this is ultimately what they want for their children. One of my friends recoiled in shock and horror during our semi-monthly kaffeeklatsch in Korea town on how shortly after she read Mark Hadden’s bestselling 2003 mystery novel “The Curious Incident of the Dog in the Night-Time”, she met with a disability studies professor who categorically denounced the book as “not being representative of the larger autistic community because the main character was “too high functioning”. The fact that we all have unique abilities, perspectives, and demonstrate different life trajectories speaks more to the complexity of the condition itself rather than any objective measure of autistic identity.

While it is true that many self-advocates are able to communicate, pursue advanced degrees, obtain and maintain gainful employment, get married, have families, pursue hobbies and interests, and lead fulfilling social lives, others of us either currently or previously struggled in those areas. For others, autism  manifests itself in a panoply of related challenges including depression, anxiety, OCD, and executive functioning deficits. If anything, we a are testaments that with adequate and appropriate supports, many autistic people can engage in some if not all of those activities and milestones if we so choose. Moreover, many of us have and still exhibit some of the same behaviors as your son and daughter (echolalia, stimming, scripting, autistic burnout etc.) but those behaviors do not necessarily impede our ability to “function” or relate to others. They are merely socially awkward or idiosyncratic and raise eyebrows upon non-autistic people. Now I am not trying to minimize or dismiss the variegated and at times heartbreaking challenges “more highly involved or impacted” individuals on the spectrum face, however I am trying to disabuse people of the notion that self-advocates such as myself, Stephen Shore, Amy Sequenzia, Ari Ne’eman John Elder Robinson, Temple Grandin, and Morenike Giwa Onaiwu, are less autistic because we have Masters degrees and are leading professionals in our respective fields. We may experience our autism differently differently from your child but we’re still autistic. Also, regarding the disgruntled remarks of people who don’t think we know what real autism is, I can tell you this much, we know it better than you. Also, it is worth mentioning that not every autistic individual identifies as such or decides to become a self-advocate. In fact, the majority of autistic people around the world and even in the United States remain silent about their diagnosis due to pervasive stigma and continual misunderstandings surrounding the diagnosis. Although there are a select few self-advocates who are precisely that (advocating fundamentally for themselves rather than the general autistic community) most of us become self-advocates out of a fervent and sincere conviction to promote the neurodiversity movement and advanced the rights of autistic people worldwide through sharing our own experiences. Many of us (especially prominent advocates such as Stephen Shore, John Elder Robinson, and Temple Grandin) have a profound understanding of the condition which extends beyond our individual experiences and qualifies us to speak about the conditions from a general standpoint. Although we may not be psychiatrists or other medical professional, we are in virtue of our neurobiological makeup and extensive career as self-advocates, experts in autism. Too many neurotypical parents (and even some autistic people) take the term self-advocacy literally and exclusively focus on us rather than the broader scope of the movement to which we belong. So yes, as John Elder Robinson stated during his closing speech at last year’s 49th autism society of America national conference in Milwaukee, “yes I do speak for your child and it is imperative that I do so.” Without our voices it is highly unlikely that your child and the next generation of autistic people will get the services they need and deserve to maximize their potential and thrive in the world on their own terms.    

Alright enough of my tangential soapbox. The overarching point, I’m trying to make is that our various achievements and the brave stoic façade we exude mask the years of trial and tribulations, speech and occupational therapy, special education, bullying, loneliness, scared relationships, botched job interviews, and societal discrimination that also define our experiences. Even as we slay dragons in our life and inch one step forward forward on Maslows pyramid towards self-actualization, we also continue to struggle fitting into an often intensely judgmental neurotypical world that doesn’t take our needs and considerations into account.

Unfortunately, most people’s knowledge of autism is limited to alarmist newsreels of mass murderers such as Adam Lanza, or sensationalist Hollywood movies like Rainman (1988) and Adam (2009).  Many purportedly educational films such as Autism Speaks’ debacle of a 2006 documentary “Autism Every Day” depict autism as a malignant epidemic or social scourge which unnecessarily burdens families and costs taxpayers exorbitantly in associated medical costs and lifelong care.  Although such portrayals may raise awareness (or more likely fit the agenda of the organization), many of us are denied services or misunderstood by our loved ones simply because we don’t fit a certain schema or expectation of autism (in other words being too high functioning).

I personally can’t even count how many ignorant comments I’ve heard from people after I told them I was on the autism spectrum and in case you were wondering, no I don’t walk down the street with a badge announcing to everyone I meet that I’m autistic. I’ve heard everything from “you don’t look autistic to me” and “Oh Archie that hardly applies to you, autism is such a wide spectrum.” or my personal favorites “Are you a savant?” and “What’s your special talent?”. Some people even think I’m lying to get attention. These same people then proceed to chastise me for making insufficient eye contact, being too aloof, or not understanding the nuances of social conversation (absolutely brilliant!)   

. A useful point of departure is to analyze the criteria many non-autistic professionals and laypeople use to evaluate functioning. I’ve added some alarmist statements for rhetorical effect.   

  • Ability to speak (So I guess people l who are deaf, mute, or otherwise can’t communicate orally are inherently low functioning)

 

This is highly insulting to a sizable number of autistic self-advocates such as one of my personal hero and role models Amy Sequenzia who are non-verbal yet extremely intelligent and wonderful people.

  • Ability to live independently and perform activities of daily living without assistance (Well there goes Steven Hawking and everyone else who relies on a caretaker regardless of their contribution to society)

 

I will spare the excessive commentary on this once since I already cited Steven Hawking’s as a compelling example, but people can still make excellent contributions to society and still live semi-independently. Moreover, I am a huge promoter of the concept of “interdependence rather than independence and I think that we should ultimately promote the former. None of us are completely independent as we are social creatures and readily rely and seek out others on a daily basis to meet our goals and objectives.    

  • Literacy (although I certainly promote the ability to read and write I wouldn’t necessarily classify the 26% of the world’s illiterate population as low functioning” per se)

 

Although I certainly understand the context in which people make this assumption my overarching point is to demonstrate the difference between “intelligence” and “education”. Learning to read is a skill primarily contingent upon a person’s ability to access educational systems or the requisite resources (textbooks and hooked on phonics) to learn the skill. Intelligence in turn is often conceived of as “the ability to acquire and apply knowledge and skills” (thank you Merriam Webster’s Dictionary). Although I personally find numerous faults with this definition as I prefer to view intelligence within the framework of neuroplasticity and Howard Gardner’s multiple intelligence theory instead of seeing it as a static entity, however I will ambivalently concede to using this definition for the purposes of my argument.     

  • Ability to hold and articulate an opinion (really, I know many people who psychologists would consider high functioning who can’t seem to do this.)

 

Many people I know  just parrot what they hear from tv, their family members, or take socially accepted positions on stances without giving much thought to what they actually believe. Moreover, many academics and philosophers question the validity of originality as a construct when it comes to ideas and opinions. I call this “limited originality”. It is very unlikely that many of us hold opinions and perspectives that are entirely original and that nobody else shares.

  • Ability to attend school or be gainfully employed (Standardized education systems doesn’t work for everyone, just saying.)  

 

  • Performance on test and IQ measures that at least fall within the average range (Regardless of what those tests actually measure)

 

  • And last but certainly the most prejudicial of all, ability to pass as neurotypical (whatever that really means)

 

Okay so now that you know what people usually evaluate in labeling a person as “low” or “high functioning” you may be wondering “So what’s so wrong or insidious about this, after all we need some semi-standardized measure of global functioning, so we can provide people the support systems they need to integrate into our fast-paced society”. Well the If you only took one thing away from this list blog post I hope that realize that many of the criteria that clinicians and laypeople alike use in to access functioning is often arbitrary and is more based on neurotypical behavioral and cognitive standards and trajectories  than a person’s ability to live fulfilling lives and meet their goals and objectives. Autistic (or other “disabled”) people are not often consulted in the creation of the criteria. Someone may not live independently or perform ADL’s but be able to hold down an incredible conversation on just about any topic under the sun. Conversely someone may live independently and hold down gainful employment and demonstrate above average intelligence but suffer in silence and isolation due to social anxiety and depression. So here are some principle reasons why functions labels are overly simplistic, inadequate and even harmful to autistic people.

  1. Autistic people often times don’t get a say as to how they are labeled.

What I’m saying here shouldn’t shock anyone. However, people (clinicians or otherwise) who assign functioning labels to autistic individuals, often do so and intend them to serve as blanket statements of a person’s sentience, ability to participate in their respective communities, and pursue mainstream higher education and/or employment opportunities. Frequently they don’t take situational and environmental nuances into account such. Moreover, it takes less into account how people conceptualize and perceive of themselves and are more so subjective reflections from clinicians and parents.  

As Amy Sequenzia and other self-advocates poignantly state in their blogs, we don’t wake up every morning thinking to ourselves “woe is me, I’m so low functioning and too needy and pitiful to be valued” or “I’m so high functioning, I can conquer the world, everyone will bow down to my intellectual radiance.” We get up and live our lives to the best of our abilities regardless of how others perceive us.

  1. The term is incredibly ableist and creates unnecessary divisions both within the autistic community and between the autistic and autism communities. This leads to what many people in the community term as “Asperger’s Supremacy” (and yes that is as bad as it sounds)

This is usually one of the main components of the “you can’t speak for my child” argument that exasperated and lonely parents often direct towards self-advocates. Yes, it’s true, we aren’t like your child, but neither are we like each other. We are all unique, amazing, and wonderful humans and we don’t need functioning labels in order to describe our unique set of differences strengths and challenges.  

  1. The low-high functioning dichotomy inherently lacks nuance and does not do justice to the complexities and idiosyncrasies of the condition.

As mentioned previously, the widespread usage of such a dichotomy often insinuates people’s abilities and intellectual capacity as inherent or static instead of changing with time, circumstance, personal motivation, and external encouragement. The more neuroscientists and psychologists learn about neuroplasticity and its implications for a person’s ability to and grow throughout our lives the more we are starting to view abilities as fluent rather than static. I firmly believe that we do ourselves and humanity a great disservice by viewing autism through binary functioning dichotomies instead  of perceiving it precisely for what it is, a spectrum condition.

  1. They unnecessarily set either high or low expectations of the person depending on the label.

Functioning labels belay the cynical social-Darwinian hierarchies that have plague human history for millennia. One only needs to think to bolster existing sociological frameworks, we are tempted to grade and categorize people and other living organisms by largely subjective measures of intelligence, complexity, sentience and social conformity rather than a person, animal, or plant’s own intrinsic worth as a sentient organism. Such a tendency for classification leads to dangerous eugenics rabbit holes such as the one that humanity found itself in the middle of the 20th century when.

As many psychologist and sociologists would concur, “functioning” is a relative and subjective construct dependent on vague neuropsychological and sociocultural benchmarks. You certainly don’t get up every morning bemoaning the fact that you don’t play chess like Bobby Fischer or perform surgery like Arkit Jaswal. Judging by those standards many of us may as well resign ourselves to a life of hopeless mediocrity and forget about striving to maximize and expand our potential since we are not naturally geniuses. Hopefully most of you found the aforementioned statement absurd and even insulting. However this is precisely what many parents, teachers, and psychologists do when they slap a “low-functioning” label on a child simply because they are not learning and developing at the rate of their peers (whose own developmental trajectories might be more nuanced than parents of autistic children may make them out to be). Amy Sequenzia (I know I mention her a lot, but you should really check out her blog posts) beautifully encapsulates this phenomenon in her quote “If family members refer to autistic children as low functioning they inevitably create low expectations”. I am no way writing this to downplay the struggles, trials, and tribulations faced by autism parents and caregivers but rather both to instill hope and dignity as well as cast autism in a more nuanced light.  to conclude this blog, I would like to write my own version of a brilliant Tumblr by a 15-year-old girl post which poignantly demonstrates how functioning labels fail to accurately and adequately describe how she experienced autism. I want to show to neurotypical naysayers and skeptic autism parents that just because we speak verbally, have master’s degrees, doesn’t mean that we experience our autism less “severely” or “intensely” than. Another relatively famous quote often bandied around in the autistic self-advocacy community comes from “If you have met someone with autism you met someone with autism” Although we may share some commonalities and similar challenges, we vary in demeanor, personality, skills, and aspirations just as much as the general population. So here it goes!

Hi everyone, I’m Archie and I’m I am autistic. I have a B.A degree in International Relations from Rollins College and will be pursuing a master’s degree in Social Work starting in September. I currently intern at the Global Autism Project, an organization that I have enthusiastically engaged and affiliated with for over four months. There I act as an autistic self-advocate writing blog posts, managing outreach for social media campaigns, writing travel literature, translating documents, and am building an international coalition of autistic-self advocates. Last year I gave a presentation at the Autism Society of America’s 49th annual conference in Milwaukee about the trials and triumphs of growing up on the spectrum which was well received. Last November I also gave an abbreviated version of that same presentation and the Princeton Rotary club. I am constantly fascinated by l humanity and take an amateur interest in anthropology, psychology, and history. I am proficient in multiple languages including English Spanish Mandarin and Hindi and am also learning Italian, French and Russian (with varying degrees of commitment, lol). I have a variety of other hobbies including cooking, reading, comparative religions, watching historical and political documentaries, working out, listening to great courses, taking online courses etc. My home abounds in book titles ranging from John Paul Sartes to a behemoth Anthology of English literature part of me aspires not only to be the jack of all trades but the master of all as well. According to my friends and family, I am fairly articulate, well-read and a decent conversationalist. People generally describe me as amicable, gracious, generous, and engaging. Throughout always praised me in school for my studiousness and academic inclinations. I currently live alone and perform most daily tasks including cooking, cleaning, managing appointments, using public transportation, grooming etc.

Hi everyone, I’m autistic, I have suffered from debilitating depression, generalized anxiety disorder, social phobia, and OCD and throughout my life.  I also exhibit poor executive functioning and fine motor skills which inhibits me from carrying out daily tasks such as planning, organizing, time management, and even handwriting. My ability to handle stress and endure physical and mental anguish is much lower than that if the average person with even the most trivial things, like my inability to memorize the names of the authors of the last 20 articles I read. Unlike many of my colleagues I can’t work long hours and sacrifice sleep in the name of increased productivity. At times my anxiety is so overwhelming that I can barely leave the house, trapped in a long winding rabbit hole of exasperation and self-loathing. Since graduating high school, I have always found it hard to hold down a full-time job and it took me over 5 years to complete my college education due to executive functioning deficiencies. I find that unless I am engaged in a special interest activity, I am highly distractible and unproductive. Far from being the wunderkind of Hollywood movies, I actually performed very averagely in school. As I once wandered obliviously through the woods as a child I now wander aimlessly through life, without the discipline or tenacity of my peers and family members to find and stick with a niche. And this was despite copious access to accommodations, supports, and therapeutic interventions as a child. To the outside world I seem normal, just your average everyday bloke finding his way through the crowded New York Subway. Going to work, talking with my friends, ordering a salad at the next-door café. However, inside my world is constantly falling apart. It’s as if the self-harming tendencies of my youth have now turned inward, causing me to emotionally and psychologically self-mutilate and disengage with the rest of humanity.

I am Archie, I’m autistic and I defy functioning labels.

You’re probably wondering how these two people can be the same person. One is independent, competent, and fairly accomplished, and while the other is a complete chaotic mess of apprehensiveness, neurosis, and psychopathology. I inhabit both of these realities simultaneously with my overall ability to function and adapt shifts daily depending on contextual and environmental factors. If you talk to me in the comfort of my own home on a day in which I am well rested and in a jovial disposition, everything would seem copacetic and you would wonder why I need so many additional supports and services in the first place. Contrarily, if you were to find me at a loud and chaotic social gathering while sleep deprived and succumbing to the unrelenting pressure of tight deadlines you would almost meet a completely different person.

How to describe autistic people without functioning labels.

So, taking everything outlined above into consideration how should non-autistic people get to know people on the spectrum without relying on functioning labels. First off, I would like to say that if you find yourself subconsciously slipping into that paradigm (which even I do on occasion) please know that you are not an inherently malicious, ableist, or cold hearted person who deserves pillory and scorn. Unless your intent truly is to demean the person, you are referring to, most of you are probably doing it out of habit. Our thoughts, feelings, and actions towards disabled people are reflections of our subconscious acculturation to ableist societal norms and values.  and that it will take years of reframing and reforming our world view to accommodate new more dynamic ways of conceptualizing complex social constructs such as autism and disability in general.

When you meet an autistic adult who you are tempted to label as high functioning, instead of assuming that they simply “pass as neurotypical” and that autism doesn’t substantially affect them, take time to inquire as to how they individually experience autism. You may be surprised to hear just how much we have overcome to hold down this conversation with you. All too often our challenges are overlooked simply because our symptoms don’t correlate with “classic autism”.. Although complimenting us on our ability to function and stating that “we’re not that autistic” may seem positive and validating it actually comes across as presumptuous and condescending since you are judging our functioning based on ableist neurotypical standards that does not do our neurodiversity justice or validate the way we perceive the world.  

Please remember the phrase “if you’ve meet one person with autism you’ve met a person with autism. Don’t ask us or our loved ones alienating questions such as “are you a savant”, “what’s your special talent.” “Or why aren’t you like my next-door neighbor down the street and Raiman or Adam” Ask us how we individually experience their autism and keep an open mind devoid of stereotypes and preconceptions. In the past the voices of neurotypical medical professionals, psychiatrists, and have drown out the voices of actually autistic people often to our detriment. If you have a question about autism get a first-person perspective rather than that of a professional. As John Elder Robinson in the spirit of ASAN’s phrase “nothing about us without us” include us in the conversation. Don’t invalidate our opinions.

Together we can unite to create a world where functioning labels are obsolete and people are accessed based on their unique set of skills abilities and challenges, not arbitrary and inherently pathological diagnosis. We can envision a society where people are evaluated based neurotypical functioning but instead based on how they perceive themselves, ability to reach their aspirations, personal. As someone who became hopelessly ensnared in the comparison trap for year I would hate for subsequent generations to by branding children with fatalistic functioning labels.

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