about Perspective (Part 2): What does High-Functioning really mean?
What does “Low-Functioning” mean? Likewise, what about “Severe”, “Moderate”, and “Mild”?
I can see how a physical characteristic or wound can be labeled severe, moderate, or mild. I can see an talent, ability or a disability can be described as high or low.
But what do these term mean when used in the context of Autism. Below is just an excerpt of the definition of function. How do we know that we are all using the same one? Are we offending people and not aware of it? Are we assuming these are the names of “official” diagnoses because they are popularly used by the general public?
func·tion [fuhngk-shuhn]
–noun
- the kind of action or activity proper to a person, thing, or institution; the purpose for which something is designed or exists; role.
- any ceremonious public or social gathering or occasion.
- a factor related to or dependent upon other factors: Price is a function of supply and demand.
- Sociology. the contribution made by a sociocultural phenomenon to an ongoing social system.
-verb (used without object)
- to perform a specified action or activity; work; operate: The computer isn’t functioning now. He rarely functions before noon.
- to have or exercise a function; serve: In earlier English the present tense often functioned as a future. This orange crate can function as a chair.
I must admit that in the past, it used to make me extremely irate whenever someone would describe The Elder (or The Hub) as “mild” or “high-functioning.” I even had a mom (who happened to also have a son with autism) tell me shortly after we received The Elder’s dx, “Oh…well that’s the good kind.” These labels offended me because it made me feel like I didn’t have a right to be affected by it or that the impact wasn’t too far from normal. I felt totally blown-off and invalidated. Maybe you can relate if your loved one has HFA or AS? My family (and others on this side of the spectrum) has many high- and low-functioning skills with their diagnoses. Many of which are invisible or intangible because they are mental/emotional/sensory processing skills. Yet because they can read, talk, walk, even run a marathon, etc – the tangible traits – no one knows just how much they struggle every single day to merely get through a day that involves any kind of interaction with another person…even with just their spouse.
On the flipside, it would formerly make me equally perturbed to hear a person labeled as “low-functioning.” Perhaps this person cannot talk, make eye contact, or only expresses him/herself through gestures and stimming and meltdowns. By definitions #1 and #1 (lol) above, these functions are indeed lacking. However, because of current testing procedures and standards this person may be categorize as mentally retarded or psychotic. It fills me with wonderment to imagine just how brilliant one can be if only we had an effective communication tool, as in the case of Sue Rubin.
Severe, moderate, and mild are much more accurate in my opinion, yet I still do not personally 1 like using those terms because “mild” insinuates that a person’s situation is easier than if it were “moderate” or “severe.” That is different for each person. “Severe” would make my heart sink whenever I heard it, and although it is the most accurate descriptor for many people on the spectrum, it was just plain too depressing for me to say.
So I adopted new terminology for my new life-long journey to keep me in my happy place. This way, I wouldn’t get mad at people, I wouldn’t offend anyone (I hope), and I wouldn’t make myself sad over vocabulary words. Over time and nowadays, I accept that people will always use those terms, so I just needed to get used to it and get over it! And even though it still doesn’t make me do the happy dance, I’ve used the terms on occasion, but not without also using air-quotes (with the accompanying intonations) or appending my preferred jargon.
Find Out Alternative Ways to Describe your Loved One with Autism
Instead of: I prefer to say: 1 autistic, has autism, aspergers, pdd-nos, etc on the spectrum, has ASD, has an autism spectrum disorder 2 low-functioning/high-functioning, mild/moderate/severe non-verbal, verbal, on the left-side or right-side of the spectrum, mild/medium/spicy3autism as a general description/explanation for a specific challenge
- Her autism makes her sensitive to noises.
- Because of his autism, he cannot participate in gymnastics.
specific dysfunctions, eg. delayed motor skills, sensory issues, being male,being [insert age here], etc 4
- Her auditory defensiveness makes her sensitive to noises.
- Because of his gross motor skills, he cannot participate in gymnastics (yet).
This is the visual I picture when I used the terms “left side” or “right side.” I really like this image because I’m a statistics nerd Rosenn’s diagram not only depicts a horizontal spectrum of diagnoses, but also a “spectrum” for each point on on the diagnoses spectrum illustrating the range within each diagnosis. Note that the wedge is not a population count. In other words, it doesn’t mean that the right side is more common than the left. It merely means that those on the left side most likely have similar characteristics of autism from person to person. In contrast, those on the right side may have completely different characteristics from individual to individual. So, if there was a comprehensive list of indications of autism, those on the left may have all or most of them checked, whereas those on the right side would have a smaller percentage of the items checked with the likelihood that any two persons’ checked items are not the same.
Clear as mud?
“If you’ve met one child with autism, you’ve met one child with autism.”
–variant of a common phrase in the autism community
1 This is strictly my preferences and not a judgment on those who use the terms in the left column. Yes, I do use the those terms on occasion, but I also prefer to have a clean house…
2 Stay tuned for an upcoming article in this series on the terms autism, aspergers, spectrum disorder.
3 Please do not be offended by my warped sense of humor.
4 A hybrid alternate: referring to the dysfunction as a characteristic of autism.
about Perspective (Part 1): What would you do? How would you feel?
Imagine you are a teacher of 20 elementary-school aged children and are also 37-weeks pregnant. In the middle of the hustle and bustle of a classroom party, one your students all of a sudden flees the room without you noticing.
Imagine you are a substitute for a teacher who is on a 6-week leave. Without warning, one of your students begins crumpling and ripping up all of his papers.
Imagine you are the parent of a 1st grader. You get a call from the school to come get your child. You learn that he has developed a large knot on his head because another child threw a chair that hit him.
Imagine you are the Principal of a primary school. A student has been brought to you for disrupting the classroom. He spits at you, disrobes, and urinates on the floor in your office.
Imagine you are the parent of that child.
Imagine you are that child.
This is Part 1 of a series of articles on Perspective. I have been procrastinating addressing a controversial topic, but because I don’t want to default on my New Year’s Resolution, I decided to take baby steps.
If you choose to share your thoughts, please post on the original post where you can also choose to post anonymously. Please be honest, especially with yourself…
about Mimicking: Youngerese is starting to sound a little familiar
‘Mommy, if you want to put butter all over the sides of my bread, you may.’
‘You can’t do — AND —. You have to choose.’ Then in same oh-well tone as me, he adds, ‘Ok, then. It’s your choice.’
‘MOM! I washed my hands with soap!’ he announces when leaving the bathroom.
–The Younger (age 4)
Ever notice how your kids start picking up your mannerisms and catch phrases (and rules)?
Because The Elder didn’t converse at age 4, he never really mimicked me. The Younger was a different story. He was carrying on conversations with people (with a valid picture ID) by age 3, as well as the walls.
I am constantly reminded of the differences between the two because of the juxtaposition of their development within the confines of our family. It’s both fascinating and frustrating.
It’s fascinating to see their development and how I can respect each milestone (and each inchstone) they reach with a much greater pride than I think I would’ve had if we hadn’t been ‘blessed with autism.’ It’s interesting to learn what ‘typical’ looks like. The Younger will pretend (on his own without prompting!), voluntarily hug and kiss us and say ‘I love you,’ beg to go outside to run around and play, prompt us for attention or approval, make/draw things for us, and other nice little typical surprises that we didn’t even know existed yet. This played a huge part in early intervention (in my opinion) for The Elder. I am grateful for their birth order and the 2-year distance between their birthdates. ’They’ say that it is common for the emotional and social development of children with an autism spectrum disorder to lag at least 2 years (–They, circa 2000). In the last 2 years The Elder has picked up these ‘habits’ and ’scripts’ from his brother. Today at age 6, he has grown to enjoy many of these habits, like choosing to play outside over a computer game, and pretending. His creative side has really developed since being in the 1st grade. There are still scripts and if-then scenarios that are apparent to me that they are little performances, but to the general public, he is perfectly normal. And I’ll take a hug whenever I can get it! 
As for the other side of the coin, I often get thrown for a loop when The Younger has typical emotional responses yet inappropriate corresponding behavior responses. I knew early on that we had to surround him with positive peer models. That way he understood that, when he’s hungry, to say “I’m hungry,” and not to strip naked and pee on the floor. That is definitely not the kind of mimicking that gives me warm fuzzies. Being the little brother who adores his big brother, mimicking is expected and is how he expresses that love (great). He will, overnight, developed the same phobias. Because The Elder acts as if ‘buttons’ are manufactured by The Devil himself, then surely that’s a valid fear, right?
BUT the flipside of the other side of the coin is that The Elder learns unpleasantries from The Younger! The Elder skipped some of those developmental phases of toddlerhood and preschool (every parent’s wish, huh?), like developing a sweet tooth, lying and stealing (often to hide his sweet tooth), calling me ’stupid’ and yelling ‘I hate you’ when I’ve deprived him of something (to satisfy his sweet tooth I’m sure). But he has begun HIS phases at age 6 after observing The Younger. His ‘regressions’ are actually his mimicking of his brother (he never actually did those things in the first place to regress to them).
As an adult, I catch myself mimicking others too, especially those I frequently see or talk with. I guess its just a part of human nature in all stages of life. The hard part is not enduring the Terrible Twos through the Satanic Sixes (and beyond). The hard part is myself being a good role model for them to mimick.
