This week’s blog is an original post by self-advocate Timothy Kiley.
I’m 49 years old, and I’ve been autistic for 3 years now… Actually, I have been all my life, as are all autistic people. I just didn’t know it early on, like many of you may have. A person doesn’t just suddenly develop autism, nor do they leave it behind when they turn 18 (or 21 if you apply for an extension).
I am what might somewhat inappropriately be referred to as a non-typical a-typical. I think most of us are, hence the idea of “inappropriacy.” Though there are commonalities throughout the spectrum, there is no cookie cutter from which we are created, nor is there a pigeon hole in which we can be kept.
I currently have a small group of about 80 fellow “autists,” most diagnosed as adults. No two of us are alike. Most of us share similar values and some common interests, but we are all different in significant ways.
My interests are many and varied, as are those of most people, autistic or otherwise. I am not exceptionally intelligent. I have no Rainman-esque superhuman abilities. I do not like The Big Bang Theory, and I have never been to Comic Con. I have no more interest in trains than the next person. I am able to decipher sarcasm and other subtle forms of humor. I can (and do) eat almost everything. I have worked in retail sales management and even automotive sales. I do NOT like being confined in tight spaces. I could go on, but it seems in typical fashion (for me), I already have. The point is, we are not all the same.
A friend of mine, who does not fit the societally imposed stereotypes of autism, was at her doctor’s office for an unrelated issue. The doctor told her he doesn’t believe she’s autistic. How do you accurately judge that of someone in a 15 minute encounter, especially enough to contradict not only the person herself, but the actual expert who diagnosed her?
I had similar issues during the process of my diagnosis. Several highly unqualified persons told me, because I was fairly well spoken, could make eye contact, and had emotional empathy, I could not possibly be autistic.
Autism is not a condition which inherently requires a specific set of behavioral characteristics. It is a different way of processing in the brain, much like different computer or mobile phone operating systems. You can do most of the same things on the different platforms (with certain exceptions), and you’ll often come up with the same outcomes, but the information gets processed uniquely.
You can’t normally identify an autistic person at a glance. If we are stimming (calming or centering self-stimulation), it may be too subtle for someone to notice. After all, we’ve had a lifetime of others telling us to stop shaking our legs, or tapping that pen, humming, whistling, talking to ourselves. We’ve often found less obtrusive ways to regulate.
We learn to mask, and we spend a lot of time and effort doing so. We observe and reflect what non-autistic people (often called NTs or neurotypicals) do. If you’ve ever been in a dramatic role on stage, you have some idea how that works. It requires continuous concentration, and it’s draining.
Some autistic people are excellent public speakers, great sales persons, musicians, artists, mechanics, pilots, teachers, athletes, or almost anything you can think of (though probably not politicians).
I am currently a specialized mechanic of sorts, assembling, customizing, and repairing mobility equipment for physically disabled people. I’ve worked full time all my adult life. I have a wife of over 27 years now, had a foster son who recently went out on his own after 3 years. I play bass and guitar by ear (though not much of late), and I have even sung and played with the musical team at my place of worship.
As for “special interests”, I have more than a few…
I am quite frequently referring to Nile Rodgers, Stevie Ray Vaughan, Hal Blaine and the other members of the Wrecking Crew, the Swampers of Muscle Shoals, and background singers like Merry Clayton (as featured in the documentary, 20 Feet From Stardom).
I like to notice and identify samples (little clips of older songs) used in modern music. I like to find rare cover versions of songs by other performers. Though I have my favorites, I am always evolving in my musical tastes and listen to a local public radio station which features a very diverse playlist.
I went to a technical college to learn to become a radio broadcaster (which is kind if no longer a thing), and to learn audio production techniques (also now long since outmoded, until the “hipsters” revive cart tapes and analog 16 track reel to reel tapes).
I like many genres of television and film, and by the time I was 18 had seen The Blues Brothers over 108 times, when I introduced the young lady (who is now my wife) to the film.
I enjoy comedy, and I have patterned most of my social life around it. In fact, it’s a bit of a crutch, and without it I’m lost, it’s become so ingrained.
Why am I listing all these things? I want to show you that you can be you and no one can tell you “you can’t be autistic” because you don’t “obsess” over Arctic Penguins, model train layouts, or philately. And if you do, that’s also great.
Incidentally, why is it neurotypical people have “hobbies” and for us it’s “obsessions”? I’ve encountered plenty of “normal” people who fixate on things far more than I do. I don’t diagnose them as autistic on the spot any more than my friend should have been “UN-diagnosed” by her doctor.
Anyway, it’s okay if you dress plain and don’t act eccentric all the time. It’s fine if you are outgoing and like to be around people (not for me). It’s certainly okay if you have no “special” abilities, narrowly focused interests or any or all of the other allegedly stereotypical autistic traits. If you’re autistic, you’re autistic, and no one else’s prejudicial assertions can change that.
Be you, not what someone else expects you to be.
About the Author
Timothy Kiley is an adult on the autism spectrum who wants to advocate for knowledge of and support for adult diagnosed Autism Spectrum Disorders.