On Functional Language…
“My child has severe autism.”
“My child is mildly autistic.”
“You wouldn’t know what it’s like, you’re high-functioning.”
So you’ve decided to select a flavor of autism. Neat. Go on with your bad self. Just know that you sound absolutely silly. Autism is autism is autism. Asperger’s, low functioning, high functioning, severe, mild, whatever. It’s not a condiment or a flavor. It’s a neurological processing condition. There is no such thing as forms or levels of autism. A person is either autistic or they’re not. The “forms” or “levels” are a false label created by a handful of therapists and medical “professionals” to make you think a child is somehow “worse” before seeing that therapist/specialist and afterward, is making progress with them, so they can tout their therapy/intervention as having worked.
Severe when? What is severe? Which symptoms? That’s the problem with using modifiers of the diagnosis. I’m selectively mute and can be non-verbal for long periods of time. There are many things I should be able to do for myself, but can’t or it causes me to meltdown quickly when attempting the task. My medical “issues” impact my sensory input/output and my ability to cope (for lack of a better term).
The subsiding and resurgence of symptoms is common, because the “symptoms” do depend on our ability to process on a daily basis (Google “spoon theory”). The less input and less demand for output, the easier it is to process. The more input and more demand for output, the more difficult. It’s a signal to noise ratio.
Every day is a spectrum for me; I have good days and bad days, which can change from hour to hour, depending on what I am processing and dealing with at that particular time. It all depends on what’s going on in my life and what I’m being tasked with. This is the same for everyone who is autistic. How we handle input and allow it to manifest depends on the input itself, our age, our emotional understanding of ourselves, our maturity and life experience, and a litany of other factors.
In my 20s, there was a period of several years where I was able to hold jobs for longer periods of time, go to work almost every day I was expected to be there, be far more social than I am able to be now, able to complete tasks, easily multitask (to the point of my mom constantly bragging at how good I was at multitasking, like it was a superpower).
Now? No way. I get distracted so easily. My ability to focus and verbally communicate is really dependent on my daily situation and the task at hand, including to whom I’m speaking (some people I can make eye contact with at times, some not at all) and the topic on which I’m speaking. I’ve seen gradual changes over the years and drastic ones, as well. For better and for worse. It’s kind of a trade off, but I’ve learned to adapt. Both on my own and through therapy.
Continuing with that topic, I can lose my ability to filter words from my brain to my mouth when I encounter sensory overload (what many people call “non-verbal” – but that’s a misleading term for another time). Does this mean that you would consider me to be one of the more severe forms of autistic, since I cannot talk at times? And almost any given “good” day I am able to speak with those whom I know well and am comfortable, but it is extremely difficult – and mentally taxing – for me to speak with people whom I do not know or am not very familiar with (their motives, actions, mannerisms, etc.).
Obviously, typing is a different story. But does it mean I’m any less autistic or any more able to lead a “normal life” simply because I possess the ability to express myself via keyboard – using my computer as an AAC device – and a vocabulary learned over more than three decades, from a mother who worked in a library for thirty years and my voracious appetite for information, leading me to read anything and everything I could into my hands? Here’s the easy answer: no, it does not make me any less autistic, further down some imaginary scale, or any more able to lead a “normal life”. There are many other ways being autistic manifests itself in my life as well, which would make you think anyone not typing this right now were “non-functional”… but that’s a discussion for another time.
I was not diagnosed with Asperger’s Syndrome, but I know several people who were (pre DSM-V)… and their lives are nowhere near normal. They still have to jump through hoops to manage their days, because people assume those who are labeled as having Asperger’s can fit right in since they’re “just quirky” and don’t have to adapt themselves at a serious cost to their executive function capabilities. Please do not assume that being labeled as having Asperger’s or as an “aspie” (I detest that term, as do many others, in case anyone was wondering) means functioning is any easier for them.
There is a good reason Asperger’s Syndrome was folded into the general DSM for autism (DSM0V 299.0); we’re all autistic and there shouldn’t be these imaginary levels dividing us. All autistic individuals need – and deserve – access to the same supports and services as others on the spectrum, some just require them in different ways or for shorter amounts of time. Does that mean they should be overlooked? No.
Functional labels are often utilized to deny agency to some individuals and deny supports/services to others, depending on how people mislabel or pigeonhole them, based on their assigned functional labels. There’s too much dismissiveness thrown around, due to these vague labels.
So let’s move past these divisive forms, levels, or flavors… let’s accept that we’re autistic and work together to secure supports & services for those who need it.