Friday, May 30, 2014

I Support Self-Diagnosing

Content Warning: discussing of invalidating identities, discussion of racism, discussion of misogyny, censored ableist slur

The Autistic communities--including parents and professionals in this case--are currently having a bit of a fight over the relevance, accuracy, and whether self-diagnosing is "appropriation" of some sorts. This blog is decidedly pro self-diagnoses. There are a multitude of reasons for that. 

First, let's understand what we're discussing. Self-diagnosis is the process by which people diagnose themselves with various things ranging from mental disorders—such as ADD/ADHD, OCD, Autism, Depression, etc.—rather than go through a psychologist to get an official diagnoses. The reasons people may do this include: lack of time and/or money to go through the psychological system, terrible or even traumatic experiences with the psychological system, or the reluctance of psychologists to diagnose individuals based on their race, ethnicity, gender, socio-economic status, or a myriad of other identities that create an impediment to diagnoses because of prejudice and bigoted psychologists. 

The rate of Autism in America is 1/68—overall. The rates of diagnoses, though they should reasonably be equal among race, culture, gender, etc., are 2.38% among males designated at birth (dmab); .53% among females designated at birth (fdab); 1.58% among whites; 1.23% among Black people; and 1.08% among Latinos. (The Asian and Pacific Islander population was not reported in the latest study.) These disparities reflect unwillingness for psychologists to diagnose women and People of Color with Autism. Instead, women tend to get diagnosed with anxiety disorders and other mental disorders while People of Color tend to get diagnosed with Intellectual Disabilities (formally called “mental r-t-rdation”). This is because psychology is dominated primarily by white men who carry prejudicial or bigoted attitudes towards their clients—whether conscious or not. 

In addition, the expense associated with getting a diagnosis is incredibly high and is out of reach for many people—especially adults considering the adult Autistic unemployment rate is estimated to be around 85%. Self-diagnosis, then is a tool for multiply-marginalized Autistics to understand and contextualize their life experiences as well as gain community in the Autistic community. It is not a “trend.” Autistics are regularly excluded, denied jobs, and in other ways oppressed by NT society, so a person “wanting” to be Autistic makes as much sense as someone “choosing” to be gay.

In addition, the insistence that only a "real" diagnoses is a worthwhile one is inherently faulty and unscientific. Psychology and psychiatry are too young and undeveloped of sciences to make meaningful claims about health in a very reliable format and exist similar to how Western medicine was at the turn-of-the-century in that you’re statistically better off with it but it is abhorrently unreliable and should not be lauded as the end all be all in any discussion. 

This does not even include how much of psychiatry is tainted with the influence of Big Pharma' which, although I make no claims that every single psychiatrist is somehow part of some conspiracy, cause the already limited data about medications to be centered ones that make them money--not necessarily what might be the best option. Psychiatry is more or less people with a good enough working knowledge fucking around with different drugs and seeing what works. And, no, I'm not being some sort of neo-Luddite with that statement, this is the stated position of every reputable psychiatric and psychological organization.
Being psychology/psychiatry-critical makes more scientific sense than tacitly supporting it. This is because, again, they are so limited that most of it is better served by the null hypothesis. The null hypothesis states that between two variables there is no relation. This concept, that nothing has anything intrinsically to do with each other until proven otherwise, is a basic tenant of science. 

This horrifying lack of psychiatric and pyschological knowledge is not for lack of trying, of course. Modern psychology is about a hundred years old. This does not include the folk-psychology which has been developed and refined for thousands of years. It’s just that humans and our brains are incredibly complicated—maybe more so than the cosmos. That’s why we’re so limited. In addition, this means self-diagnoses is pretty much as—and possibly more—effective as official diagnoses. And you know why? Because identifying a symptom in yourself through careful, cautious, critical analysis is much, much more reliable than going to someone who may not even be trained in knowing what to look for. 
Another way that modern psychiatry and psychology are horribly unscientific is the way they are currently—and historically—set up is just a reflection of societal norms. These norms include cis-normativity, hetero-normativity, masculine/feminine-normativity, and of course able-normativity. It is not, as some think, a system of describing brain types in a neurodivesity-lite format, but a system of pathologies based on said societal norms. So that has the potential for gross-misdiagnoses and the creation of intrinsically meaningless diagnoses. I for, example, was given a diagnoses of Opposistional Defiance Disorder [ODD] Disruptive Behavior Disorder Not Otherwise Specified*, Generalized, Anxiety Disorder, and Non-verbal Learning Disorder, before getting my Asperger's Syndrome/Autistic diagnoses.  People of Color tend to get mis-diagnosed with ODD more so than white people. If that is not a very clear example of something wrong with modern psychology, nothing is.
And remember, this is not just me saying this, but it is the therapist I go to and the opinion of the American Psychological Association, the NHS, and again, literally every reputable organization that deals with mental health in any way. Self-diagnoses is beneficial to many, many Autistics and gives them community. This is important. Do not discourage people from critical self-diagnoses. Please, before you go harassing people, research your shit. 

*I just looked through my diagnoses forms. My mom misinformed me slightly but then said this post was wrong. Whatever. 


  1. I have very mixed views about this... as I am a formally diagnosed aspie and a health professional (OT). So, please forgive me if I said something that might offend you.

    I definitely agree that screening and diagnostic testing can get really expensive. (It can be more expensive than getting braces for one's set of teeth.) Also, the wait can be agonizingly long. So, from this perspective, it is completely understandable that people might choose self-diagnosis over a formal one whenever they can.

    That said, a self-diagnosis can have its weaknesses. The most apparent one is getting necessary accommodations at school or work, particularly where an official diagnosis is helpful. Another one is that it provides a better justification for services goes. But something not a lot of autistic advocates know is- self-diagnosed autistics' voices are not heard in autism research generally. I say that because as I come across research articles that I might use to prepare my presentation proposals for OT conferences, self-diagnosed autistics are at least usually excluded from these studies.

    Being a person who sees the pros and cons really well, I am going to stand on neutral. It is a matter of there are enough reasons to seek a formal diagnosis or not, and it is different for each person. In other words, is there enough to gain with a possible formal diagnosis to justify the lengthy wait and the associated costs in doing so- especially in necessary services goes? Also, if a person is willing to go through the diagnostic process, will he/she be investing time and resources to locate possible people who might be able to help him/her so that he/she can best prepare for life after a possible diagnosis? The answers to the questions are different for each autistic individual. Only he/she will be the best person to answer such questions.

    1. I appreciate your comments and I understand the concern. This post is about deconstructing the arguments of whether or not the validity of critical self-diagnoses should be questioned. I affirm that no, they should not.

      However, as you point out, getting services is an issue many Autistic people will face--diagnosed or not. It is preferable for an Autistic to get an official diagnoses for that reason, but there is no intrinsic reason why a "official" diagnoses is any better than one made by the individual themselves.

      As an aside, this space tries to be Transgender-inclusive and the use of he/she or s/he or any other combination like that isn't. The convention for a gender-neutral pronoun has evolved in recent years to being a singular "they" which was only recently taken out of English. I'm not saying you're a bad person or anything [for any of these comments for that matter], just please be sure to use singular they next time.

      Thank you for your comments.