Image of black bird perched atop an empty closed cage with words below reading: Birds born in a cage think flying is an illness. In all capitals. Quote by Alejandro Jodorowsky.
The spectrum of autism, including the variable attributes of nationality, age, gender identity, ability, intersectionality, and coexisting conditions, greatly determines one’s understanding of the complexity of living on the autism spectrum.
The medical deficit model, of looking at autism through a narrow scope of biologically flawed or abnormal, needs to shift.
Where there is much to be said, in the necessity of finding support means for autistic people, there is also much to be gained in finding ways in which professionals use a scope of neurodiversity to analyze and interpret autism and autistic human beings. Starting with recognizing the diversity of the autistic spectrum itself.
We need to break through the damaging paradigm of deficit and rise into the wide open space of diversity and inclusion.
This weekend, while listening to a virtual neurodiversity summit, a medical professional spouted: “The world just isn’t ready for autistics.”
She was referring to the growing number of ASD children soon to be aging into adulthood. As an autistic adult, who has a middle son on the spectrum, I felt a profound sting. Indeed, I didn’t attend the summit the following day.
What this medical professional doesn’t realize is two-fold: 1) We’ve always been here, us autistic people; and, 2) She’s got it backward–it’s not that the world isn’t prepared to assist autistics; it is the fact we autistic folks aren’t prepared for this nuances and dangers of the world.
To date there is a glaring lack of research considering ASD adults, who have lived a life on the spectrum, past full brain development. We adult autistic humans need to be considered as a valuable resource. Unfortunately, we are commonly discarded in favor of outdated books and flawed research, or some new theory. Refined, crisp bibliographies and source-listings, trump people. If I had a coin for every time a new study comes out with obvious findings and an autistic pipes up, “we could have told you that years ago,” there wouldn’t be a national coin shortage.
As an autistic professional, who doesn’t take things at face value, I realize that just because someone wrote it or said it once about autism, doesn’t make it a fact, or a withstanding truth, especially with the passing of time and new discovery; regardless, many a professional quotes and cites information which, when brought into the light of examination, makes little to no sense; or perhaps, at minimum, might need to be reconsidered in the wake of emerging autistic voices and the passing of time.
One troubling marker of autistic studies, especially those based on literature review, is much of the literature is laden with stereotypes, misinformation, and outdated material. In some instances, a paper is backed by the process of one writer quoting another writer, who originally quoted another writer, with that writer basing their findings on observation or hunch or defective research. Just because it’s written, doesn’t mean it’s truth, or holds true with the test of time. Particularly, when something is considered outside the norm of the cultural majority.
Autism is no longer only a disorder. Some would argue it’s not a disorder at all. Numbering 1000s and 1000s of individuals on the spectrum, and their supporters, the autistic minority movement itself is evident that autism is part of a culture. Beyond a disorder or condition, autism is now commonly claimed as an identity. Those who think this shift in consciousness of a word and label doesn’t make a difference in research and discovery, need think again.
Being the diagnosis of autism is not consistently and reliably determined by one test or one theory, and, at best, is based on biological markers numbering over 200+, and oftentimes smeared in with a kaleidoscope of other conditions (e.g., Ehler’s Danlos Syndrome, epilepsy, Tourette’s, POTS), we ought step back and consider the societal influences on a diagnosis and what precisely determines the transitional abnormal, and in tow: autism.
We must question what is considered adequate and truthful. The definers and origins of ASD are debatable, even amongst respected researchers. With such discrepancies, sometimes including quibbles between academia circles at top universities, we ought use caution when claiming something as fact.
We must use caution in research, recognizing autistic individuals as human beings with human rights, the fact that ASD is classified as a developmental disorder presenting differently based on age and environment, and the implications of leaving out overlapping conditions, and any a number of variables the autistic population presents.
Regarding research, there are sometimes obvious omissions of subject specifications, primarily the inclusion and exclusion criteria utilized in case subjects or data collection.
When considering a diagnosis, with an obvious societal-norm influence, and a definition that continues to transition (e.g., Aspergers was once a standalone diagnosis), it would seem instinctual to include cultural minority definers, such as: socio-economic status, gender identity, ethnicity, race, age, intellectual disability, in the conversations of autism predicators and findings. Obviously, an intellectually disabled autistic individual will present differently than an autistic who is diagnosed intellectually-gifted, savant, or with childhood trauma.
What are the definers of a research study, other than being autistic?
Are we not a heterogenous collective with unique individuality and markers? Age alone, or demographics alone, are enough to represent a cornucopia of presentation style.
We need detect in autism research, if there exists a lack of transparency in reporting out the error of measurement methods or a reliance of small clusters of a homogenous group. In example, a study that examines the employment outcomes of caucasian males under the age of twenty-five, who once attended special day class, should not be efficient data for representing the employment rates of a whole autistic population. Nor should a diverse study of college students under the age of thirty represent the autistic elders’ experience, particularly those diagnosed after the age of thirty. Logic tells us as much. Along the same lines, we need include the means and method for inclusion and exclusion criteria.
We also need use transparency and humility to report the flaws of the data collection and excavate the researcher’s confirmation bias. In example, collecting data from a Twitter poll will likely reach a wide audience of adults under thirty years of age, while Facebook polls will likely attract an older generation. A study done on cohorts with a median age of twenty-five will yield results different than a cohort of adults with lived-lives spanning decades.
Just as there is little to be found of autistic individuals of color, later-age, lower socio-economic class, and across the gender spectrum, at other times all minority traits are clustered together in a clump for one study; as if those diversity factors aren’t relevant and significant variables.
Comparison studies of children on the spectrum compared to adults on the spectrum could prove useful, as to the effects of late-age diagnosis on research outcomes, versus diagnosed in early-childhood. The studies themselves need be analyzed, held under a microscope, not autistic people. There are distinct factors to consider in ways in which autistic people might be supported, including mortality rates, menopausal and other hormonal effects, intersectionality, and the effect of school trauma.
More attention and money need be earmarked for support services for autistic individuals, not cultural myopic biopsy of a sector of the human race.
Because of the misinformation circulating the globe about autistic people, including our way of being on this planet and are preferences, some adults on the spectrum are putting forth effort to create informal studies about autistic individuals. Autistic people sometimes have the capacity to get 1000s of responses, in vast comparison to the typical limited numbers of subjects stepping forward for official research. Perhaps pull us in to the conversation to assist in spreading the word.
Autistic research studies don’t always explain the rationale behind the chosen subject, patient, or subject population, such as why there was a different ratio of males compared to females, other than that was what was available; nor do they spell out the specific criteria utilized for exclusion from a study. When reasons for selecting subjects for a study aren’t clear, this perhaps implies that any autistic will do.
The spectrum of traits of autistic subjects isn’t always taken into consideration, nor our co-morbid/coexisting conditions, such as eliminating or including subjects who are both autistic and dyslexic, or those who are autistic and also prone to seizures. The strong possibility for having a coexisting condition is often an oversight. And even the coexisting conditions themselves are difficult to distinguish from one another, such as the overlap with social anxiety tendencies with ADHD, gifted-intellect, and generalized anxiety disorder, or the similarities in having difficulties in lasting relationships, particularly in younger years, between those with ASD and those with mood disorders with manic episodes. There is also the gender spectrum to consider, with a large proportion of autistic individuals being LGBTQIA+. Multiple intersectionality factors directly affect aspects and values of social inclusion, friendship building, feelings of isolation, employment rates, and other life experiences.
It’s important to consider that an individual’s neurodivergent diagnoses and traits and characteristics often overlap. Take for example the complexity of someone as myself, who is diagnosed Asperger’s Syndrome, gifted-intellect, dyslexia, PTSD, and Generalized Anxiety Disorder. Any of these aforementioned conditions affect levels of anxiety. Gifted-intellect and Autism Spectrum Disorders both notably come with social and sensory integration challenges and sensitivities. In relation to my neurological brain variances (neurodivergency), I do not know where my autism starts and where it ends. We might consider the presence of multiple neurodivergent attributes, which cross over into one another (e.g., anxiety as a marker in both ADHD and autism), to be what I call ‘blended neuro-divergency;’ and refer to an individual, who has more than one neurodivergent presentation type, as a ‘blended-neurodivergent.’ If nothing else, we should agree that we cannot adequately determine where one neurodivergent condition ends or begins. And, I’ve yet to meet an autistic individual who did not present with at least one coexisting condition, outside the definers of ASD. Markedly, to assume or report anxiety is a result of the standalone autism, and not any number of other factors (coexisting conditions, environment, culture), is not accurate science.
Of great concern, is the blind-dependency on the seemingly end-all authority of the the DSM-V, without adequate thought or foresight given to the discrepancies and history of the physicians “Bible” of mental disorders and conditions. The book of abnormal, as if in truth brought down from the skies from an almighty source. Blinders, or not, the DSM-V once claimed being gay and left-handedness as disorders.
With such discrepancies in resourcefulness and validity, when compared to transitioning societal norms, then we should consider the DSM-V as a transitional source, at best, and pseudo-science at worst.
Particularly, if one delves into the plethora of nuances that connect the DSM-V to the influences of special interest groups, including the big-pocketed pharmaceutical industry and monopoly of the health care industry.
Evidence of the dangers of professionals who are not taking note of the autistic holistic experience, are the detrimental falsehoods about ASD that take decades to erase; such as individuals with autism lacking empathy or creativity, or not wanting friendships. Damaging stereotypes that take many of us autistic people years to process and a lifetime to battle against.
As long as autism is separated from the person, then the holistic outlook of being autistic will continue to be lost, and the deficit-model reinforced.
Wherein there are many neurodivergent aspects that exist alongside ASD, such as Generalized Anxiety Disorder and PTSD, autism in and off itself is less distinguishable, when removed from cultural norms. There is empirical evidence that autistic people experience no social-deficits amongst their own people. We need consider turning the table and examining the social-deficits of a sole non-autistic individual with a group of adults on the autism spectrum.
We mustn’t assume that young autistic adults are privy to the social and cultural implications, which result in agreeing to be part of a research study. Particularly studies tracking and redirecting behavior. Autistic youth are members of a marginalized minority, who are classified as disabled, and protected under specific laws and acts. Without having the hindsight to lived years, and options for longstanding advocacy, we must protect the youth, uphold the law, and not let them serve as proverbial guinea pigs. Look out for autistic individuals with intellectual disabilities or those who are not aware of the nuances of the longterm effect of being programmed to fit into a mainstream ideal of normalcy. No one ought to be trained to adjust to a way of being that goes against the very nature of who they are.
The autistic youth, before agreeing to any study, ought be exposed to peers and mentors as role models and educators of their rights, especially prior to succumbing to being observed, evaluated, and examined in random cohorts. There ought to be autistic oversight of grant projects about autistic human beings: the millions of dollars focused not on how to fit the square peg into the round hole, but how to adjust the round hole to be more inclusive. Researchers should create preliminary focus groups of autistic professionals before pitching a grant and receiving funding. There needs to be ethic committee members who are ethical and which include autistic people, and accountability attached to outcomes.
Taking into account the autistic person screaming in the corner and administrating self-harm, which is a legitimate concern, from both a moral and humane standpoint, we must remember this is one aspect of the autistic experience, and does not account for everyone on the autism spectrum and feasible coexisting conditions. We must separate the intellectually disabled and the individuals requiring advanced support measures from those of us who need a level of support but are not intellectually disabled. Though we are moving away from functioning-labels, it is still vital to consider the ability, independence levels and support level needs of each autistic in a study. It is important to decipher the feasible reasons harmful behavior is occurring and take the time to study cause and effect, the environmental impact, parenting, and parental support, moreover than wondering what causes autism.
For those autistic individuals that require increase support needs, more must be done in adjusting the environment to fit the child; not the reverse, in which the individual is being bribed, shamed, programed, and punished to fit a societal norm. Analysis ought be done on the parents and caretakers, regarding how much the existence of stress-levels is determining the chosen ways in which to assist the child or the agreement to subject them to research. The approach should be child-centered and adult-centered first and foremost. What is best for the emotional well-being of the individual on the autism spectrum.
The more we can pull back from a medical-deficit-model of autism and have mature open discussions about the transitioning meaning of autism, wherein actual autistic individuals are brought to the table, the more we can break out of groupthink and apply cognitive-diversity to bring quality supports and equity to the autistic community.
Marcelle Ciampi (aka Samatha Craft) is a respected autistic author and community advocate, is best known for her writings found in the well-received book Everyday Aspergers. A professional educator, she has been featured in various literature, including peer-reviewed journals, Autism Parenting Magazine, The Mighty, Project Aspie, Art of Autism, and Different Brains. Marcelle works as the Recruitment Manager and Outreach Specialist at Ultranauts Inc., an engineering firm with a neurodiversity-hiring initiative, and is a consultant for Uptimize and Spectrum Fusion. A contributing author of Spectrum Women: Walking to the Beat of Autism, Marcelle speaks globally on the topic of neurodiversity. She also serves as the founder of Spectrum Suite LLC, the co-founder of the Spectrum Lights Inclusion Summit, co-executive of LifeGuides for Autistics (neuroguides.org), and a contributor and advisor to autism organizations and conferences internationally. Some of her works, especially The Ten Traits, have been translated into multiple languages and been shared in counseling offices around the world. She resides in the Pacific Northwest U.S.A. with her sons and life partner.
“Everyday Aspergers is an unusual and powerful exploration of one woman’s marvelously lived life. Reminiscent of the best of Anne Lamott, Everyday Aspergers jumps back and forth in time through a series of interlocking vignettes that give insight and context to her lived experience as an autistic woman. The humor and light touch is disarming, because underneath light observations and quirky moments are buried deep truths about the human experience and about her own work as an autistic woman discerning how to live her best life. From learning how to make eye contact to finding ways to communicate her needs to being a dyslexic cheerleader and a fraught mother of also-autistic son, Samantha Craft gives us a marvelous spectrum of experiences. Highly recommended for everyone to read — especially those who love people who are just a little different.”
~ Ned Hayes, bestselling author of The Eagle Tree