According to the Oxford dictionary, diagnosis (noun) is defined as “the identification of the nature of an illness or other problem by examination of the symptoms.” In the medical world, if one has an ingrown toenail, a medical professional can examine the toe and recognize the classic symptoms – swelling, redness, heat, and pain in the region. To detect if infection has set in, blood tests can be performed. If the toe has become infected, common antibiotics can be prescribed to treat the problem and, combined with the surgical remedy, return the toe to it’s normal state. In the case of a problematic toenail, it’s quite easy to determine the normal and abnormal states.
Autism, on the other hand, has no specific diagnostic criteria as such. At the present time, there are no medical tests (blood, imaging, & etc.) that can diagnose autism. Currently, autism is diagnosed by specially trained clinicians who administer autism-specific behavioral evaluations. In addition to their own observations, these professionals also rely on the observations of parents, physicians, and therapists to learn as much as they can about the person in question in order to make a diagnosis. It’s a qualitative judgement, not a quantitative analysis. It’s subjective, not objective.
Compounding the problem, there aren’t enough people with the proper qualifications to render a diagnosis. In the US, a licensed and certified rehabilitation counselor (CRC), for example, is one such professional legally allowed to issue a diagnosis. To sit for the licensing and certification exams requires the candidate have a least a Masters degree in Counseling or related field. In Los Angeles county, the college offering such a program of study is California State University Los Angeles (CSULA). It admits 36 students each fall to this three-year course of study – in a town of over 4 million people. After spending over $25,000 for this full time program ($55,000 for non-Californians), and donating over 600 hours of work as a non-paid intern, one can look forward to a career that pays below the line needed to live in the Los Angeles area. Consequently, there are no CRCs in my area. This lack of available staff leads many to “self-diagnose,” which presents it’s own problems and is a topic for another article.
Back to diagnosis.
Remember that medical science generally classifies things as ordered or disordered. When things are working “normally,” they’re considered ordered. When things are not working “normally,” they are considered disordered.
The Diagnostic and Statistical Manual of Mental Disorders (DSM), Fifth Edition, is the 2013 update to the DSM, the taxonomic and diagnostic tool published by the American Psychiatric Association (APA). In the United States, the DSM serves as the principal authority for psychiatric diagnoses. Treatment recommendations, as well as payment rates, are often determined by DSM classifications.
Here’s where the problem emerges. What is the baseline? What is a “proper order” for the human brain and sensory systems? What is the “normal” human?
If one begins from the standpoint that the autistic brain and sensory systems are disordered from “normal,” then there should be a rather straightforward treatment plan to restore the disordered to order. But, humanity doesn’t work that way. The idea of a static, “normal” human flies in the face our amazing biological / psychological adaptability and diversity, as well as the genetic record.
There’s no hiding the fact that the DSM considers the autistic brain as a disordered brain. As an example, the various “symptom diagnoses” of Sensory Processing Disorder, Asperger’s Disorder, and so forth, as found in DSM IV, became “autism” and “autism spectrum disorders” in DSM V.
There’s no hiding the fact that the DSM considers the autistic brain as a disordered brain.
The APA assumes a baseline “normal” then assigns the term “disorder” to those things that do not operate according to their agreed upon definitions and baseline. This change has had huge implications across our society, from insurance plan pricing and options to the educational system’s Individualized Educational Plans.
People regularly seek out a diagnosis of autism because the diagnosis, the paperwork, is necessary to access services, receive accommodations, and/or receive monetary support.
The problem with this mindset, the “trap” if you will – that of ordered vs disordered – can be seen in the revisions of the DSM as it relates to human sexuality. For example, the classification of gay, lesbian, and bisexual sexual orientations went from “paraphilia” in DSM I to “sexual orientation disturbance” in DSM II to “ego-dystonic homosexuality” in DSM III. The variance in human sexual identity and preference was dropped altogether from DSM-III-R and subsequent editions.
The medical community stopped looking at the variance of sexual identity and preference in terms of ordered vs disordered – with the disordered needing to be “cured.” The legacy of this viewpoint is slowly disappearing as more areas ban so-called “Gay Conversion Therapy.” Further to the point, the roots of racial classification can be in imperialist Europe’s attempts to justify it’s plunder of the world’s resources, which was cemented into the modern consciousness by the Eugenics movement over 100 years ago. This movement assumes a “normal” and an “optimal” human being. In their case, themselves being of European origin, the Eugenicists’ baseline was “Caucasian.” Every variance was considered a disordered version of the baseline. Yes, this sounds ridiculous, and indeed it is. Yet, we continue this classification today to achieve certain political and social ends.
Back to the human brain, autism, and diagnoses. What if autism and so-called autism spectrum disorders aren’t disorders at all but variances in the wiring diagram of the human system – in the same way that there are variations human skin color around the world?
With this in mind, what if the wiring difference commonly known as autism isn’t a mistake or a disorder? If it’s not a mistake, but an end result of tens of thousands of years of human evolution, what purpose does this wiring plan serve? What is the purpose of a relatively solitary, intuitive, empathic, and highly intelligent being? Recent research shows that what is now considered autism has been with us for thousands of years and has survived through the natural selection process. For example, researchers now believe that what we call autism may have had advantages in humans’ hunter-gatherer past.
For example, USC’s Jared Reser looked at how autism’s strengths may have played a role in evolution. Individuals “on the autism spectrum” would have had the mental tools to be self-sufficient foragers in environments marked by diminished social contact. The penchant for obsessive, repetitive activities would have been focused by hunger and thirst towards the learning and refinement of hunting and gathering skills. Their desire for peace and solitude may have pushed them beyond the boundaries of civilization – turning them into the first explorers.
Given this, is the autistic system actually disordered? No. I don’t believe it is.
In my research, I liken the autistic brain to an unregulated quantum field generator. What psychiatrists see as disorder is actually the result of an untrained person in control of this powerful tool as it processes time. There are two basic ways humans process time, chronologically and teleologically. The majority of humans process time chronologically – sequentially. The past is past. Here we are now. The future is ahead of us somewhere. Not so with the autistic brain.
The autistic brain processes time teleologically. Past, present, and future are blended together with purpose and plan to form a multi-dimensional mental image of the person’s goals, or Quality World Picture.
Anxiety and depression, for example, can result when an untrained person attempts to manage their personal quantum field generator – essentially attempting to choose the “correct” path among multiple possible outcomes (or a cascading probability calculation), with the operator unanchored by time. Seeing “the problem” in this way, one can easily explain why modern psychiatry has no answers in “treating” autism. They don’t understand how the autistic brain works, so they label it disordered, then attempt to dull it through powerful narcotics so that it can fit in with the majority of the population. Their “solution” is completely unsustainable, not to mention unethical.
Back to the idea of diagnosis as a trap; why a diagnosis is necessary in many circumstances, and why the diagnosis mindset actually prevents sustainable solutions.
In the majority of the western world, a formal diagnosis is necessary to receive accommodations in school or the workplace. Laws are in place to address obvious needs, like ramps to accommodate mobility issues and braille signage to accommodate the blind. But autism isn’t always obvious. Sensory issues, for example, present themselves differently across the autistic population, preventing a standard set of accommodations that can be codified into law.
In my doctoral dissertation, I explored the problem of the abnormally high attrition rates of autistic college students. The starting point of my analysis was the fact that less than 60% of autistic students survive even the first semester of college, with less than 2 in 10 remaining in school through graduation. Section 504 of the Rehabilitation Act of 1973 is American legislation that guarantees certain rights to people with disabilities. It was one of the first U.S. federal civil rights laws offering protection for people with disabilities. But, colleges have largely exempted themselves from accommodating autistic people for a variety of reasons.
Although college students with disabilities are protected from discrimination under Section 504, some professors take a dim view of students who request accommodations. I’ve seen this myself, even with a diagnoses and letters from my doctors outlining how the various aspects of how I experience autism impact my ability to engage with school and learn alongside my peers. College-bound students must learn self-advocacy skills – how to present information about their disability and accommodations so professors will want to help. The non-verbal population are still figuring this out. But, if college students can master self-advocacy skills, they are more likely to make a successful transition from high school to college and remain there through graduation. But, that’s only one domain of the issue.
Consider also that students often choose a college major around their particular interests. For the autistic person, they might be an expert in their favorite subject, having read and studied it from every angle prior to arriving at college. Then, that expert – with all of the requisite passion but little of the social tact – meets a completely unprepared professor. Professors are not used to having students in their classes who are more knowledgeable than they, especially undergraduates. The reactions of staff to such situations range from indifference to outright hostility and bullying of the students.
Feelings of powerlessness can also occur when the student is not allowed flexibility to complete assignments when there is a dispute over facts or procedures with the instructor, or when communication issues complicate student / teacher / peer interactions. The current situation is hardly optimal, and is nothing that can be addressed with a formal diagnosis. The solution in this case is a modification of the staff’s behavior and attitudes towards the learning environment, turning the classroom interaction from monolog to a more collaborative dialog – something they should be doing anyway.
Diagnosis sees autism as a problem to be solved, not a difference to be celebrated and embraced. One needs the diagnosis to force organizations to respect basic needs. Why aren’t organizations doing this as a matter of course?
You see, the concept of diagnosis only addresses one side of the equation. It says, one party to the relationship will (within limits) tolerate the other party’s presence if required by law. Diagnosis sees autism as a problem to be solved, not a difference to be celebrated and embraced. One needs the diagnosis to force organizations to respect basic needs.
Why aren’t organizations doing this as a matter of course? The diagnosis, the Schedule A letters, the IEPs, the 504 Plans; they provide an out for organizations. If you don’t have one, they don’t have to do the human thing – remove the barriers to your fully participating in their activities and services. As those of us with a formal diagnosis will tell you, it can be quite expensive and time consuming to get a diagnosis as a child… and it can be next to impossible to get one as an adult.
Organizations will generally make an attempt at equality, if forced. But they won’t go so far as to consider equity, or even justice, on their own. Why?
The root problem is a general lack of acknowledgement and appreciation for the amazing range of variation in humanity, as well as the many ways that variety expresses itself
For these reasons, looking at the issue from the standpoint of disorder and diagnosis doesn’t actually solve the root problem. The root problem is a general lack of acknowledgement and appreciation for the amazing range of variation in humanity, as well as the many ways that variety expresses itself. This lack of consideration, this lack of empathy, is at the root of the various pieces of legislation made necessary by the exclusionary policies of organizations over the years; the ADA and the Rehabilitation Act in the US as examples. If you think this an absurd statement, consider that California recently became the first US state to ban discrimination based upon one’s natural hair type / style. Yes, as silly as it seems, people are being discriminated against because of the curl of their hair. Organisations felt comfortable disciminating, the legislation was necessary to get them to stop.
The final piece of the trap is philosophical. To many in the adult autistic self-advocate community, for one to accept the diagnosis is to accept that one is disordered – that there is, in fact, something wrong. They simply don’t accept the premise that there’s anything necessarily wrong with being autistic, anything disordered.
To accept that autism is in fact a disorder, and not simply a variation in the human wiring system, can lead one to not find one’s true purpose or one’s proper place in this world. These self-advocates proudly wear the label of autistic. It’s a means of grounding or placing one’s self in context. As Marcus Garvey has famously said, “A people without the knowledge of their past history, origin and culture is like a tree without roots.” The autistic self-advocates are putting down roots, attempting to leave a legacy for the next generation of autistic people.
I tend to take a more intersectional view of autism. I’m not afraid of the word “disability.” I also realize that much of what I’ve just written is rooted in the medical model of disability. The sad fact is that most of the world functions within the medical model, so I’ve framed this topic within those terms. I also recognize that the intersectional view is highly personal. What this means is that I can only advocate for me – based upon my history and needs. I’m a sample of one. My lived experience can’t speak to anything other that what I need, for me, in my life. Through decades of work, pain, and suffering, I’ve gained certain skills – like the ability to vocalize some thoughts sometimes and to write these articles – that many autistic people won’t. I’m an autistic parent of an autistic child – but my experience is just that, my experience.
From a philosophical standpoint, I’ve tried to analyze my experience through the lens of Martin Heidegger’s Being and Time. I’ve tried to use his definitions of percepts, concepts, and terms used in forming my opinions so that we could have a common starting point. I would invite you to study Heidegger. I plan on reframing my study notes from Being and Time as an exploration on what an authentic autistic life is like in a future article. Hopefully, philosophy is not just my special interest.
Thanks for reading this month. Have a great day.
