The Diagnosis Dilemma
Updated: Oct 26, 2019
For a long time I have been grappling with the decision of whether or not to pursue an official diagnosis of Autism Spectrum Disorder.
Besides the many complications of an adult diagnosis (most diagnostic resources are built for children), and diagnosis as a woman (ASD can manifest very differently in women than in men, and the diagnostic tools available today were largely created with males in mind) - having the official diagnosis feels almost simultaneously like putting myself in a cage, and at the same time finally getting a key to open a long-locked door.
ASD as a Label
When I first started to really believe I was on the spectrum, I was disinclined to explore diagnosis as an option. It felt too much like the cage. I was afraid of the label, and what it might do - to me, and to the way others treated me. Labels have a tendency to take on more meaning than they merit.
This is why it peeves me so much when adults put labels on children, who may not have the tools yet to understand that a label can be fluid and highly subjective. “She is a shy girl,” they might say, or “he is a loud boy” - even innocent labels like “shy” or “loud” can easily become integrated as fundamental aspects of a person’s identity.**
Labels as an adult are equally dangerous, with layers of complexity, media-reinforced stereotypes, lack of full understanding of what a label might mean, and a plethora of other problematic human tendencies that abound when it comes to labels, such as over-simplification, using labels as excuses, jumping to conclusions, snap judgement, and so forth. I was afraid that, even subconsciously, I might start using the label as a crutch myself: “Oh, I have Asperger’s, so I can’t do X.” I was afraid that other people might start shoving the crutch under my arm for me: “Oh that’s right, you have ASD, so I can’t expect you to do Y.”
I was most afraid that my husband, whom I love dearly, would begin to resent the fact, however unwillingly, that he had married someone with a disability (especially one he hadn't known about when he made the commitment).
And then, of course, there’s that word: Disability.
ASD as a Disability
Autism Spectrum Disorder is classified as a disability in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the international gold standard of psychological and behavioral classifications. As with any disability, it is seen as a disability for the most part due to the fact that it can cause a person difficulty functioning in a mainstream environment, which is built to accommodate the majority. Here again we demonstrate our human need for categorization and comparison in order to arrive at the definition of something or someone. More labels.
There are times when, to me, it feels like I have a disability. There are other times when it feels like I am the same as anyone else. Then there are times when I feel like I have a distinct advantage - when my ASD-linked “difficulties” become indispensable attributes that allow me to do or think something that no-one else can. In many ways, we all have our own idiosyncrasies and differences which place us outside the "norm," - whether or not these differences are classified as "disabilities" essentially boils down to how much outside the "norm" we land.
And yet, disability or not, there's also the inescapable comfort and relief and solidity in simply knowing. Knowing who I am, knowing where I fit, knowing why I am the way I am.
Diagnosis: The Cage or The Key?
For a long while, not pursuing the diagnosis did not interfere much with me feeling like I know who I am. I've been me for 30+ years, after all. But as I continue to research, and to find illumination and validation at every turn, I am starting to feel like the diagnosis is inevitable. It is becoming a fundamental part of who I am - who I have always been.
Not only this, but some of my greatest fears surrounding a diagnosis have begun to fade. I have not started using the knowledge of my "disability" as a crutch. I still push myself, learn new things, try as hard as I can. My husband has not drifted toward resentment or crutch-enabling. Quite the opposite, in fact.
I am starting to see the benefits of the diagnosis, such as knowledge, access to resources, etc., outweigh the potential cons, like stereotypes or artificial limitations. I will share more of where this journey takes me. For now, I'm starting some earnest research into the diagnostic resources available in my area, specifically for adults with Asperger's Syndrome, and specifically for women. If I find anything worthwhile, I'll be sure to share links either here or on my homepage.
**As a society, we assign labels to our children on almost a subconscious level in order to reinforce the social expectations we collectively place on different genders, races, levels of ability or affluence, etc. - but that is the stuff of another post...