As I’ve noted before, I’ve found it far more difficult to come out to people as having Asperger’s than as having any of the other diagnoses I’ve received, and many other people have encountered similar issues.
I think this is because people see autism differently than they see the other things I’ve been diagnosed with. The currently accepted discourse of mental illness, learning disabilities, and neurological disorders holds that those disabilities are somehow separate from people’s true personalities, so it’s not surprising when someone with OCD isn’t constantly and visibly acting obsessive-compulsive or if they seem to have personality traits that don’t directly flow from their OCD diagnosis.
So when I say I have OCD or a tic disorder, people pretty much just accept that, even if they’ve never actually seen me engaging in a compulsion or tic (or haven’t recognized that that’s what I was doing). At worst, they’ll note that I am not obsessively neat, but even then that’s usually a funny comment rather than a serious attempt at questioning the diagnosis. I think most people understand that compulsions can take various forms, and even those who don’t know that are willing to trust me on that.
If I say I have ADHD, I am slightly more likely to encounter some resistance. People will sometimes assume that it’s impossible to do well academically when you have “real” ADHD, as opposed to the “fake” ADHD that people get diagnosed with so that they can get extra time on tests.1 But I can usually respond that I’ve been diagnosed after a pretty rigorous battery of cognitive tests and that I got extensive informal accommodations, and training in self-accommodation strategies, starting in elementary school. People are usually fine with that. If they know me well they’ll point out that I’m sometimes able to focus very intensely on something I’m interested in, but I can usually explain this by saying that I also have OCD, or that episodes of “hyperfocus” have been observed in many other people with ADHD.
Autism, on the other hand, is seen as pervasive, affecting every aspect of a person’s personality, so every single personality trait that seems “inconsistent” with autism spectrum disorders is seen as proof that one doesn’t have it. This, of course, often includes traits that, anecdotally, don’t even seem uncommon among actual Autistic adults, such as ability to express emotion, ability to understand abstract concepts, or ability to coherently discuss the emotional states of others.
Given the fact that it’s so much easier to come out as having practically any other “overlapping” mental, learning, or neurological disability, I find it interesting that autism spectrum disorders are perceived as “trendy” self- and adult-diagnoses. I have many friends whom I met in high school or college who have since started self-identifying as having some sort of autism spectrum disorder; every single one meets the diagnostic criteria for some other major disorder in the DSM-IV (mostly ADHD and major anxiety disorders). If we wanted to we could just stick with those, and it would be so much easier to get people to believe us. So why don’t we?
I can’t speak for my friends, but here’s what I like about my Asperger’s diagnosis:
- It’s comprehensive. People with ADHD aren’t expected to have compulsive issues as well, and people with OCD aren’t expected to have tics. It happens, but it’s not considered the norm. So if I wanted to give someone a sense of what was going on without mentioning Asperger’s, I’d have to go through a laundry list of disorders. On the other hand, at least when I’m talking to people who are actually familiar with Asperger’s, most or all of my various symptoms are “covered” under the Asperger’s umbrella, no need to separately list them except when they happen to come up.
- In fact, it actually explains more than my other aggregated diagnoses, particularly my sensory integration issues (one person I know, who has a degree in mental health, consistently doubted my Asperger’s diagnosis until she saw how badly I reacted to the sound of construction) and ability to hyper-focus on topics of special interest.
- It’s more consistent with how I feel about my own behaviors. The diagnostic criteria for OCD, for example, require that the compulsions be distressing to the individual. Some of my “compulsions” are distressing to me – particularly skin-picking – but other “compulsive” behaviors are downright fundamental to my sense of self, such that I can’t imagine being happy without them. With respect to the latter, I would rather be accommodated than cured. This seems to be more common among people with Asperger’s than people with OCD.
- Similarly, I am pretty sure I spend lots of time ruminating over social situations, not because I’m overly anxious, but because that sort of rumination is sometimes actually necessary for me to understand what’s going on.
- I actually relate to the narratives of others in the Autism community. Some might criticize this as more of a sociological consideration than a clinical one, but I think that sense of self-recognition should be recognized as actually diagnostically significant.
What’s more, even though others have told me that it’s a “horrible” diagnosis that I shouldn’t seek out, so far the only seriously negative repercussion of my Asperger’s diagnosis is the fact that those people are saying that to me. It’s clear to me, having met a lot of people diagnosed in childhood or adulthood with Asperger’s and other autism spectrum disorders, that this is not a diagnosis held only (or even primarily) by thoroughly unpleasant, boring, and emotionally inaccessible people. When I say “I have Asperger’s,” I do not mean that I think I am any of those things. I am saying that I have a bunch of sensory and attentional issues that make it hard for me to do things like switch gears, acclimate to new social situations, sit still, cope with background noise, inhibit repetitive movements and behaviors, or “move on” from a topic of conversation or study that I find particularly compelling.
I understand that people apparently want to reserve “Asperger’s” exclusively for people who talk loudly and monotonously about the Lord of the Rings and won’t leave you alone (something I actually used to do but have learned to inhibit), but that leaves me with no commonly recognized word for the set of symptoms that I have and that I happen to share with a whole bunch of other people who’ve also been diagnosed with Asperger’s (unless we manage to get squigglebrain disorder included in the DSM-V).
1 Incidentally, I only started needing more time on tests due to ADHD after I started on ADHD meds, which temporarily threw off my sense of when I was done with questions. Before then I’d just rush through and be done way early, and I don’t think that’s terribly uncommon among kids with ADHD. When you think about it, it’s kind of perverse that the default response to ADHD in kids is usually forcing them to sit in testing sessions for longer periods of time.