December 17, 2018: That is the day I learned I was on the autism spectrum. Specifically, what used to be known as Asperger’s Syndrome, but is now, in the newest version of the Diagnostic Statistical Manual, (aka, the DSM-5), simply called “Autism Spectrum Disorder Level 1”. This was a highly significant day in my life, as it helped to clarify so many of the experiences that preceded this knowing: almost 44 years worth to be exact. And when you’re talking about wondering why you are different from so many others, in a world that seems predominantly geared towards neurotypicals, that’s a mighty long time. That said though, I was truly grateful to find out why I was the way I was and to have a name to describe it.
That name however, comes with one word that I wish to drop, and that is the word disorder. I am absolutely fine with being on the autism spectrum. I happily refer to myself as an Aspie, the shortened form many people diagnosed with Asperger's Syndrome still use, even if the DSM-5 does not. But the terms disorder and syndrome simply do not resonate with me. Disorder is a noun, meaning “lack of order or regular arrangement, confusion”, “an irregularity”, and a “disturbance in physical or mental health functions; malady or dysfunction”. Syndrome is a noun meaning "a group of signs and symptoms that occur together and characterize a particular abnormality or condition". Looking at things in a literal way, as many folks on the spectrum tend to do, I suppose one could say these definitions are technically correct. The “lack of order or regular arrangement” of how people on the spectrum experience the world may confuse neurotypicals. In fairness though, the way neurotypicals do things and experience the world confuses us too. So where’s their disorder? As far as irregularity goes, I suppose the way we do certain things might be considered irregular to those not on the autism spectrum; but not to other autistic people. As for “disturbance in physical or mental health functions”, well, certain symptoms that can accompany autism, such as depression or anxiety, are indeed disturbances to one’s mental health. And finally, with regard to "a group of signs and symptoms that occur together and characterize a particular abnormality or condition", I would just ask the question, abnormal to whom? Different, yes, but abnormal, no.
All of this said, again, if just looking at these terms literally, I suppose autism can be considered a disorder or syndrome, if one is just looking at them strictly by their definitions. But can a person with a particularly-wired brain be completely categorized by a definition alone? I think not. People are much more nuanced than that. The terms disorder and syndrome also makes it seem that something is inherently wrong with autistic people, and this is completely false. Each person's brain is wired differently. Some brains are neurotypical, some are autistic, some are ADD or ADHD, etc. etc. None of these things are wrong or bad. They are simply different. And, each different type of brain has both challenges and strengths; so why not define these difference by strengths instead of by weaknesses? And while we're at it, Why the new terminology of Autism Level 1, 2 and 3? What's with the levels? Are we playing a video game?
Instead of levels, I propose we change the DSM's description of autism to note the degree of support the autistic person needs, (Ex: Low Support Needs, Moderate Support Needs, and High Support Needs). Defining the so-called levels of autism this way is more accurate, in that it lets the people in an autistic person's world, such as their teachers, bosses, doctors, therapists, etc, know the level of assistance they require in order to help them live their best possible lives. To further this, specifying the type of the support(s) they need, (ex: what basic activities of daily living, such as bathing, dressing and grooming, do they need assistance with and what more independent living skills such as cleaning, financial management, and maintaining a home, do they need assistance with) will help those providing care, better understand and be able to meet their client's needs.
So again, I am grateful for having a term to that helps to describe the reasons why I am the way I am and why I do many of the things I do. I just propose dropping the words disorder and syndrome, as there is nothing wrong with me or anyone else on the autism spectrum. Get to know us, and you'll see! Then drop the S and drop the D. :)
Anne Sabagh is a Certified Life Coach based out of Northern Virginia, about 20 miles outside of Washington, DC. The name of her coaching practice is Neurodiverse Universe Life & Executive Function Coaching. She sees clients in person at a mutually agreed upon location if you are in her local area, as well as conducting coaching sessions via phone or a web-based platform like Google Hangouts from anywhere.
She specializes in working with individuals on the autism spectrum, with ADHD, and other neurodiverse traits. Being on the autism spectrum herself (Asperger's), Anne understands deeply how her clients experience the world, and works with them to help them work with their differences, play to their strengths, and most importantly, feel good about themselves.
Anne loves animals, music, nature, and spending time with her family and friends. She lives in Northern Virginia with her wonderful husband, Tony, and their beloved cat, Robin.
She can be reached at:
Phone: 703-732-2468 (Eastern Time Zone)