Userbox Dump: Identity & Misc

I've been professionally diagnosed with level 1 ASD. Prior to my diagnosis, I had suspected for years that I was autistic, and had been told to pursue diagnosis by my psychiatrist (who brought up ASD without my mentioning it) and had my symptoms affirmed by my therapist. My Master's thesis and research was specifically on the experiences of autistic teachers, and in the course of completing it, I spent dozens of hours reading scientific papers on autism and interviewing autistic people. I've worked directly with diagnosed autistic students at varying levels of ability. Additionally, I have autistic relatives, and for as long as I can remember, nearly all of my friends were/are autistic (and/or ADHD). In other words, I had a very strong understanding of autism and how it presents.

However, my diagnosis came later in life--just this year, in fact--and I was telling people, including my manager and my diagnosed-autistic students, that I was autistic before I was diagnosed. I conceptualized and completed my Master's research and thesis while I was in the process of being diagnosed (which occurred through multiple appointments over 9 months) and yet included, in the introduction, a statement about my own autism, despite not yet having an official diagnosis. Autism, particularly through my interests and the characters I relate to, became a huge part of how I saw and understood myself, and I would have struggled to let go of that if I was told I did not meet the diagnostic criteria. In other words, if I had been wrong about being autistic, there would have been significant consequences.

I had good reasons for telling people "I'm autistic," rather than saying "I think I have autism." The first statement would sometimes be met with mild surprise, but would largely be accepted, and it opened doors for me to unmask more quickly and find acceptance for my "strange" behaviors and needs. The second statement would almost always receive strong pushback, especially from people who had autistic relatives themselves, and my thorough justification of my reasoning would be ignored. Rather than acceptance leading to openness, this response shoved me further into my box of performative masking, costing me energy and making me feel distant from the people I was trying to be close to. And for what? I knew I was autistic. Why not just say it like it is? Why go through all the hassle just to be hurt for it?

But the thing is, I didn't know. I was pretty darn sure, and it turns out I was right, but at the time, I didn't know I was autistic. And I never even felt entirely comfortable saying it as if it was a fact, precisely because of the (albeit small) possibility that I was wrong. I wanted to share who I was with people, to be able to be myself--but I could have done that without claiming the label of autism, until I had received the official diagnosis. In hindsight, I wish I had approached my social identification with autism differently.

On the other hand, I needed my students and employer to know I wouldn't be able to function like a neurotypical teacher. At the start of the school year last year, I hadn't yet begun the diagnostic process, but I knew my autistic behaviors and needs had caused confusion in my classroom the year before. My students struggled to understand nuance or shades of grey, and often felt threatened by uncertainty, so I determined telling them "I am autistic" would give them more confidence in relating to/interacting with me than saying "I probably have autism." (It did, and it also gave me many opportunities to support and uplift my autistic students and challenge the thinking of my allistic students.) I knew I wouldn't receive any flexibility from administration if I said "I think I'm autistic," but when I could defend my wearing headphones or needing my classroom's fluorescent lights off with "I have autism," they were reluctant to push back as hard (although they still gave me no meaningful accommodations without the official diagnosis). In short, preemptively claiming autism as a label was the only thing that gave me the understanding and accommodations I really needed.

All this to say, as much as I hate to admit it, self-diagnosis (at least with autism) is not black-and-white. (It's making my brain hurt, hence this post.) I'm uncomfortable with my past actions, but I also see that those actions directly, genuinely, and verifiably contributed to my wellbeing. I can't parse exactly which of my choices were acceptable and which were wrong, because my circumstances were very complex. I also recognize that other people will have similarly complex circumstances, even with differing particulars. So, logically, I'm forced to say that in some situations, self-diagnosis may be temporarily necessary and allowable.

But I do have some caveats, and some advice for any (especially young) self-diagnosing people who are reading this:

Self-diagnosis should not be a long-term solution. No matter how much research you do, you will not have the expertise of a medical professional. A common response is "I know my own brain better than anyone else!" But, simply put, that is false. You know your own perception of your brain, but we possess remarkable capacity as humans to convince ourselves of fabricated realities. You are not able to be objective about your own experience--you need others to verify it. If your experience is not remotely observable by anyone else, it may not be real, even if you believe it is. Another response is that "Medical professionals are just people! They can be wrong!" Yes--but, because they have been trained, that likelihood is far lower than the chance that you are wrong. For example, without training, it's unlikely that you would be able to reliably differentiate between the presentation of schizophrenia and autism. (If you are surprised by that, it only proves my point.) If you are resistant to being evaluated by a professional, sincerely and humbly consider that you may simply, and understandably, be afraid they will not validate your interpretation of your experience. But validation is not the purpose of a diagnosis; clarity and truth is.

Related to this, carefully consider the reasons and contexts in which you are identifying as autistic. It is not as simple as saying "I was wrong" if you are openly identifying as autistic in all of your social and professional environments and then are informed you are not autistic. The fear of this happening may form a barrier to seeking diagnosis, and may lead to a refusal to accept a diagnosis that does not confirm your perception. Again, diagnosis is intended to help you understand yourself accurately, not to validate all of your experiences. If you are using the term "autistic" because it is the only way to get support without which your health or career would be in jeopardy, that is a unique circumstance--and a diagnosis would provide more effective support, so you should be heavily motivated to pursue it. However, if you are identifying as autistic because it helps you accept yourself, your behaviors, and your needs, please recognize that you are allowed and able to do those things anyway. You do not have to have a "good reason" for needing to take a break from social situations, or for talking "too much," or for not liking to be touched. You are allowed to have boundaries and be different from others without a label to justify it. Your identity does not stem from a term or a condition, it comes from within you. Accepting this will ultimately be better for you, in your journey of self-discovery and acceptance, than using the word "autistic" ever will, whether you are autistic or not. And, in the event that you are not autistic, it protects you from the incredibly difficult task of having to deconstruct a false identity that you have latched onto.

This leads to my final point: fundamentally, autism is not an identity. It is a disability. It is a condition that causes distinct impairment for those who have it, even people such as myself with lower support needs. Much of the popular conception of autism has become identity-focused, for understandable reasons: humans are social by nature, and we are constantly seeking community and understanding by forming shared identity groups. Projecting onto fictional characters is one way people do this, myself included--it's not lost on me that pretty much any character I like will at some point or another have the term "autistic" applied to them, and I don't intend to stop doing that. But I am comfortable doing that because, realistically, I can recognize that most characters I relate to would not meet the diagnostic criteria for autism. They show similar traits to me, often in many ways, but the struggles of autism are generally not meaningfully represented on screen or on the page. (This is not to say there are no realistically autistic-coded characters; there are, and they are worth analysing.) What I am, typically, actually doing, by posting and getting excited about characters "being autistic," is attempting to accept the traits and qualities I see in them in myself. Fundamentally, my investment in their "autism" is not as much about them as it is about me. I am aware, when I say that some character or other is autistic, that they may not have been written or performed that way, and there may not be sufficient evidence for that claim; I am comfortable saying it anyway, because I know my own experience, and that's what I'm ultimately looking to accept. I don't just know the parts of myself I see in them, I know the struggles I face because of my disability--struggles these characters usually don't show. And that is exactly why it is dangerous to latch onto "autistic" as a label, and the characters and subculture that go along with that label, before you have been diagnosed yourself. You may resonate with what you see, but you do not see the whole picture. And when you are trying to accept yourself through what you see, being told you are not part of what you're seeing feels like your whole self is being shattered--if you aren't autistic, how can you relate to this character? How can you relate to that experience? In actuality, you are able to relate to those characters and experiences, even if you're not autistic, because the autistic experience is at base a human one. We all have more in common than most people assume. But there is more to autism than what people often talk about, and it's dangerous to build an understanding of yourself off of, and form an identity from, experiences that are only part of the whole picture.

To sum up, a lot of self-diagnosis in young people stems from a desire for self-acceptance and acceptance from others. If that is you, I tell you sincerely, there are better ways to form and places to base your identity. If you are using the term "autistic" to describe yourself, without a diagnosis, please seriously evaluate your reasons for doing so. Ask yourself if you have any resistance to pursuing diagnosis, and if you do, really interrogate why. If you are afraid of being wrong, it's likely that some part of your identity has become wrapped up in autism, and you are viewing it not as a disability, but as a grounding point that justifies your experiences--as who you are. And while I relate to this tendency, it's crucial to remember that autism is not who I am. It is not who anyone is. It is a part of me, and shapes who I am, but I am far more than autism. I am a human being. I am myself. And that would be true whether I was autistic or not.

When someone says “I have depression” we don’t say “oh so you were diagnosed with major depressive disorder?” We just take their word for it. We don’t say “well, you don’t have an official diagnosis so your symptoms and experiences aren’t valid” we don’t say “well a doctor knows better than you, you are biased as an untrained individual”. That’d be fucked up. Imagine telling someone who’s severely depressed and suicidal that “well you aren’t officially diagnosed so you’re probably just faking for attention”. That’s so fucked up.

Same with people who have anxiety. You don’t ask “oh so generalized anxiety disorder or an acute phobia?” You just accept their word that they experience stress more intensely and have less developed coping mechanisms to deal with it.

But when it comes to autism and self diagnosis these statements and questions are acceptable. Is depression inherently “less serious” than autism? Is anxiety also “not as extreme” of a case as ASD? Are the people who self diagnos depression and anxiety somehow “more mature” or “smarter” than people who self diagnos autism?

I wanted to write this for a number of reasons.  First, I wanted to provide an explanation of the process I went through in order to help those who are currently seeking a diagnosis, to give them a better idea of what they might reasonably expect to experience.  Secondly, I see many posts on this site which dismiss official diagnoses with statements like, “All they do is give you a list of traits to fill out!” or, “Doctors sometimes don’t have enough experience in X disorder to know what they’re talking about!”  

I cannot speak for other diagnoses, but I can tell you now that as far as autism is concerned (and also ADHD; I will add a post about my diagnostic experience with that condition once I receive my assessment results), the number of tests which rely on quantitative data (e.g hard numbers that leave no room for interpretation), external family input, and the observations of both a primary and secondary diagnostician, both in the room at the same time, and who later compare notes, mean that a single doctor’s interpretation or idea of what autism does or doesn’t look like is largely irrelevant to the diagnosis.  

For the way in which I was assessed, if you met the numeric cutoff for the various tests, you got the diagnosis, if you didn’t, you didn’t.  There was really no room for doctor bias or opinion.  I was 21 years old at the time of testing.

My diagnostic evaluation took place in increments over a period of five days that spanned a three-month period between February and April.  The eval was administered by a graduate student who was being filmed and mentored by a doctor in psychology.  The student met with the psychologist after each of my sessions, and the footage and test results were reviewed and discussed.

My initial appointment was two hours long.  It consisted of a detailed intake evaluation which included questions about my current and childhood histories; my family and relationships; the symptoms I experienced both past and present; questions about physical illnesses, any substance abuse, trauma, and all other meaningful life events (family deaths, divorce, etc.).  I was given basic one-page screenings for symptoms of depression and anxiety (neither of which I had in sufficient quantities at that time to warrant diagnosis; those would come later).  I was also given two different multi-page forms for my parents to fill out (my mother completed mine.)  They asked detailed open-ended questions about my early childhood and development, any anomolies or missed milestones, my medical history, etc.  They also included at least 50 likert-scale questions (questions whose responses are chosen from a multi-point scale; e.g 1-5 with 1 being mildest and 5 being most severe) about traits I exhibited throughout my childhood which would be specific indicators of ASD.  My mother filled these out independently with zero input from me.

My second appointment occurred two weeks later.  I submitted all of the paperwork I and my parents had been given to complete, and was given an IQ test, specifically the WAIS-IV (Welscher Adult Intelligence Scale edition 4).  This test took two hours to complete, and consisted of spatial reasoning and pattern-recognition tasks (creating patterns from blocks, visually constructing complex illustrated shapes by selecting a specific quantity of smaller illustrated components, the trail test, etc.).  Following that were tests of short-term memory and memorization; auditory processing; abstract language abilities (e.g similarities between given words, word definitions, etc.); mental arithmetic and number manipulation; and general knowledge assessment (e.g who was X famous dead person?  What does this formula mean? etc.)

The second appointment also included a self-test to pinpoint features of psychotic or personality disorders such as Schizophrenia, Antisocial personality disorder, Bipolar disorder, etc.  This was not a basic test in which answers could be fabricated to achieve a specific result.  It had a built-in failsafe which allowed the examiner to determine if the answers were genuine or being manipulated during scoring. 

Appointment number three took another two hours, during which I was given the WIAT-II (Welscher Individual Achievement Test, edition 2).  This was a test of academic achievement which screened for academic ability, particularly as it related to the overall intelligence scores attained on the IQ test.  It was used to determine the presence of any learning disabilities, and examined everything from oral reading ability to reading and writing comprehension; spelling; basic and advanced mathematics and processing speed. 

The final appointment before sitting down to discuss test results took just under an hour.  The grad student who had been examining me performed the ADOS-2 (Autism Diagnostic Observation Schedule edition 2, module 4 for fully verbal adults).  Sitting to the side to observe our interactions and score the test, was a second grad student.

This test was a semi-structured interaction between the examiner and myself, during which time the examiner presented a multitude of activities which were designed to elicit specific responses, the nature of which could indicate the presence or absence of autism.  It “pressed” for responses to social reciprocity; attempts at social overtures; nonverbal body language; idiosyncradic language or behaviours; odd or extremely narrow interests; complex body movements; theory of mind; and the understanding of complex social behaviours such as friendship, marriage, and emotional expression.

The fifth appointment was when I finally received the results of my evaluation.  The grad student who had tested me gave me an 18-page document detailing every aspect of the assessment, from the details of our conversations about my childhood and experiences, to breakdowns of the scores on all of my various tests and explanations of their meanings, and a multi-paragraph examination of my ADOS results, along with a quantitative chart denoting my scores relative to each social press.

Page 14 noted that I officially met the necessary criteria for an autism spectrum diagnosis, and that I had no learning disabilities or depression, but that my anxiety, while not severe enough to warrant a diagnosis, was high enough to be in need of monitoring.

The four pages after that contained a number of recommendations for future treatment, including individual therapy, social skills group, medication, and continued self-education.

And there you have it.  As you can see, an autism evaluation, when conducted properly, is so much more than just a doctor giving you a checklist of symptoms, or of you describing your symptoms to a psychologist and their saying, “Yep, sounds like autism!”  It is very detailed and complex, and takes a lot of time and energy, both on the part of the person being evaluated, and on that of the diagnostician.  It is not a simple thing, but, at the end of the day, you can rest assured that the testing was thorough and in earnest, not something that was cobbled together halfheartedly.

This is why I get so frustrated when I read things like, “I know myself better than a doctor does!” or, “Doctors make mistakes too!”  Of course doctors make mistakes, they are human too.  The difference is, doctors are far, far less likely to make a mistake than a layman reading information on the internet, because they’ve studied their specific field for years, and taken very specific, very difficult licensing exams to be able to conduct testing.  Doctors also have the ability to use objective, quantitative evaluations of your strengths and weaknesses to reach conclusions about you that you didn’t know about yourself.  For example, I suspected that my atrocious math skills were a result of dyscalculia.  They’re not.  They’re the result of a severely diminished processing speed (as in 13th percentile severe, meaning that 87% of the adult population has a processing speed that is faster than mine).  If I had just rattled off a list of symptoms to my psychologist and said, “I really suck at math,” and she took that at face value, I could easily have been misdiagnosed with dyscalculia and given inappropriate treatment.  I don’t need to be taught math differently, I just need to be taught it more slowly.  Please remember this post the next time you see someone say, “Professional diagnosis is no more valid than self-diagnosis because professionals just listen to you talk about symptoms and give you a checklist off the internet!”  Thank you.