Why Get an Adult Autism Diagnosis?

Welcome to all of my visitors from Melissa Dahl’s post on Today.com about Susan Boyle’s adult Asperger’s diagnosis…and mine! Please leave a comment if you share a similar story or have otherwise been touched by what you’ve read.

It’s official: I am on the autism spectrum. Today, my psychiatrist added Asperger Syndrome (colloquially known as Asperger’s Syndrome) to my chart and on my insurance form. It’s something I’ve been thinking about for a while, but the realization that my kid is getting older and may have questions soon finally spurred me into action. When we finally have that talk with them about their own Asperger’s diagnosis, I want to be able to tell them that it’s okay. Mommy has it, too.

[Note: This was originally published on May 8, 2012, and a lot of terminology is now outdated. Asperger’s doesn’t exist as a diagnosis anymore, and the term is problematic for several different reasons, as is the term “special needs.” I still had a lot of internalized ableism that rears its ugly head here, too. It is possible to learn and grow, however, and I leave this mostly intact in its original form to see how far I’ve come as I’ve learned from my fellow autistic people over the years.]

What are Asperger’s Symptoms?

As sort of an afterthought on my way out of my previous appointment with my doctor, I asked him if we could look at getting me the official diagnosis. In seeking that Asperger’s diagnosis, he pulled out his handy dandy copy of the current Diagnostic and Statistical Manual of Mental Disorders (DSM IV) to go through the diagnostic criteria for Asperger Disorder. Here they are:

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:

(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction (B) failure to develop peer relationships appropriate to developmental level (C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people) (D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus (B) apparently inflexible adherence to specific, nonfunctional routines or rituals (C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements) (D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

My symptoms? Let’s go through them in order.

I have issues making eye contact, though it’s not as pronounced as it can be in others with a more severe form of Asperger Syndrome. I have trouble reading people as far as intent and sincerity; I don’t read body language well. I’ll come back to the peer relationships part… I have a feeling it’s something the doc and I talk about a lot. I don’t start conversations with real-life friends and acquaintances at parties and such; I’m only a sharer online. And social reciprocity escapes me quite often; I’m terrible at inviting people to dinner and other things after they’ve extended invitations to me. Granted, my house is not conducive to having company, but I expect I will still overlook the opportunity to do stuff with people when we finally get a bigger house.

Then there’s the second part. People with Asperger’s tend to have obsessions. Mine are generally computer-based, and my current obsession is World of Warcraft; it has been for over a year. I think about it even when I’m not logged in. Inflexible adherence to routine? I have tremendous discomfort when I can’t sit in my seat when we have Sunday dinner at my parents’ house. (It doesn’t happen often; I can only remember one recent occasion when my grandma was sitting alone on the opposite side of the table and my mom told her I would move to keep her company. I moved because I love my grandma, but it just felt wrong sitting with my back to the window.) I also must be to my husband’s left whenever we are seated or walking together. I do have a finger-flapping issue. It’s not as noticeable as someone who flaps their arms as a stim, but once it starts, I can’t stop it until it’s over, even if my fingers start to physically hurt or cramp from it. (My toes do the same thing.) The last bit there is not applicable to me.

And it’s not one of the criteria, but I am hopelessly clumsy, with an awkwardness of movement typical of people with Asperger’s, some of whom like to self-describe as Aspies. Wikipedia uses the phrase “unusually pedantic,” which does apply to me, as well.

Understand Relationships with Asperger’s

I’m going to go back to that part about failing to develop peer relationships appropriate to developmental level. In all of my personal research into Asperger’s Syndrome since my kid’s diagnosis, I never realized how much this part applied to me until today, when my psychiatrist made a point of it. Most of my in-game friends from World of Warcraft are in their 20s – many in their early 20s – which is a completely different stage in life than where I am. If it weren’t for all of my mom blogger friends met through social media, most of the people I’ve ever felt closest to in my life have been younger than me – or at least less mature if our physical ages were similar. As a high school senior, most of the people I hung out with were juniors, and my boyfriend was a sophomore. I never officially dated anyone older than myself, and the guys my age I saw casually in college were certainly not emotionally mature. (Their unwillingness to stop seeing – or even telling me about – their girlfriends was a sure sign of that.) Even my wonderful husband is younger than me, if only by a matter of months. The social difference is much bigger, though, because I was a grade ahead of him. It matters little now that we’re in our 30s, but I suppose there were distinct differences when we first started dating as teenagers in college.

It’s something I can be aware of now, and I can use this framework to look back at parts of my life with better understanding of why I’ve done some of the things I’ve done.

There is No Pill for Asperger’s Disorder

While the world of psychiatry is rife with pharmacological cures, there is no medication to treat Asperger’s. So what was the point in getting a diagnosis at this point in my life, when there’s nothing I can actually do about it? For me, it’s important to stop feeling like I’m faking my connection with other people on the spectrum. Before, I would only confess displaying “features” of Asperger’s, unsure if I truly qualified as part of the community. Now I know I belong. Belonging is a strange thing when you’ve tried so hard all your life to fit in somewhere, and so often have failed. (Thank God for the Internet for removing some of the barriers I’d faced growing up.)

It also provides a specific framework for looking at the choices I’ve made and have yet to make. How much of my life has been shaped by neurological wiring I knew nothing about? Knowing what sort of predispositions I have because of this thing called Asperger’s, maybe I can make better choices in the future. I can try to work on the things that are more difficult for me, although I know I’ll never be a graceful dancer, and I’ll never really be comfortable with small talk. But maybe I can practice better eye contact with people. Baby steps.

Good Things About Having Asperger Syndrome

Another reason I wanted to get diagnosed was so I could show my kid that having Asperger’s doesn’t mean you’re doomed. I don’t like to brag, but I’m very intelligent. [Update: Intelligence is a flawed construct, and IQ is an invalid measurement.] In elementary school, the school psychologist told my parents I’d scored in the genius range on the IQ test. That’s something that often comes along with Asperger Disorder. After all, it’s speculated that some pretty bright folks had Asperger’s: Abraham Lincoln, Albert Einstein, Benjamin Franklin, Bobby Fischer, Carl Jung, Friedrich Nietzsche, George Bernard Shaw, George Washington, Marilyn Monroe, Henry Ford, Isaac Newton, Beethoven, Mark Twain, Michelangelo, Thomas Edison, Thomas Jefferson, Vincent Van Gogh, Mozart… That’s pretty good company.

For me, Asperger’s manifests positively in my attention to grammar and spelling. I’ve built a successful career from my skill as a writer and editor. Unusually pedantic? Yes, but that means I get things right for my clients. If that means I’m sometimes called a grammar cop, so be it. Aspie obsessions can lead to amazing things, as evidenced by that list of famous people above. It’s about finding a way to make it work for you. (Admittedly, I wish my obsession with playing WoW paid off as well as my obsession with the English language!)

There’s a great article about the Benefits of Asperger’s Syndrome, and it makes some very good points. I like the part about the Aspie difficulties with social conventions lead many of us to be incapable of things like racism and sexism. We see people as people based on their own merits in our own minds.

And there’s me, of course. I had a terrible time getting picked on – verbally bullied – back when I was in school, but I made it through, and with at least one close friend who’s stuck with me for more than half my life. And a handful of friends I still see a few times a year for holiday parties and such.

I’m a mom with special needs, with a special needs child. I’m a small business owner on the autism spectrum. I’m a happily married woman with Asperger Syndrome. It’s hard for me to talk to people I don’t know. It’s terrifying to speak in front of groups of people. sometimes I just don’t “get” what other people are talking about. But I’m muddling through, and even succeeding at a few things, the same as anyone – Aspie or neurotypical. You can be on the spectrum without most people ever knowing you’re anything other than “a little odd.”

Why did I get diagnosed with Asperger’s as an adult? Because it felt like the right thing to do.

Read my Big Fat Medical Update for more details.