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 Mourning: The Grief Cycle
In the last 3 weeks, I’ve had 2 friends pass away tragically. In one case, my friend is actually the widow, and in the other, my friend and I were once in a small group together. Both are very dear to me. Not because we were best buddies and told each other our deepest secrets. Not even that we went out for brunches or coffee. No regular text messages or emails were ever sent between us. I love them because during the time we spent together, they both made an impression on me of love, positivity, humor, and beauty. Not just in general, but like it was for me.
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” –Maya Angelou
That imprint on my heart they made is why I find myself mourning so much, especially for their families. Out of respect for their families, this article is not about them, but about the lesson I found about dealing with grief.
Grief stinks.
“Grief is a journey, often perilous and without clear direction. The experience of grieving cannot be ordered or categorized, hurried or controlled, pushed aside or ignored indefinitely. It is inevitable as breathing, as change, as love. It may be postponed, but it will not be denied.” Fumia, Molly. (2003) Safe Passages.
I’ve been fortunate to still have my immediate family here on Earth. Yes, I’ve had family members and like-family members pass away. I can remember the heartache at the time that it happened. But now my memories of them are of joy and happiness I shared with them while they were alive. I have completed my grieving process and enough time has passed that it no longer negatively affects the quality of my life.
Last night, immediately after the memorial service I became extremely overwhelmed. Not only for the obvious reasons, but I had been “relocated” back in time to a place in my life where “normal” was nowhere close to what my new normal has become since then. I was in a building and surrounded by people and memories of that past life that, comparatively, was much simpler, more flexible, more prosperous, and made me more available to be of service to others. I was reminded of the personal struggle of being on the fence of deciding to leave a life I wanted to keep but couldn’t have my cake and eat it too.
It was at the end of the service when the “losses” that I have had to face since then all came rushing back to me. Right there. In the most inappropriate place to be thinking about yourself.
I found myself feeling like a stranger, an outsider watching people mourn and comforting each other. I didn’t know what to do. It was like I didn’t belong. **
Like I didn’t deserve to be there, to be among the hurting, to be hurting.
I became dizzy with feelings I have already once mourned – the rejection, the isolation, the loss of friendships, the loss of trust, the judgment of being a bad parent despite the constant effort I put into it, the judgment that my child has special needs despite his high IQ, that my child is not accepted, that his sibling is not accepted, no birthday party invitations, no one coming to birthday parties, the loss of social engagements and adult interactions, the loss of freedom, the lack of support, the lack of help, the lack of time/money to hire enough help, the ten-fold increase of responsibility, the finality that it really is all up to me and accepting that this is not going to go away, the loss of simplicity, the fact that “Catch 22″ is the way of life, that even the best of friends don’t know how to help so they don’t, that even the best of friends think they know how to help so they do- but they don’t, the loss of confidence, self-esteem, and ultimately mourning the feeling that I had to hide all of these emotions and fears because of the feeling that no one would understand, no one would care, no one should have to endure my drama, and I didn’t want to be pitied.
Why was this happening right now? I’ve been through this already. I’ve forgiven myself, I’ve forgiven people. And fortunately, I have a failing memory so I’m pretty good at the forgetting part too. I know it had to be evident on my face, but I also knew that I was the only one focused on me.
I felt horrible.
I felt insensitive.
I felt guilty.
So I left. I left, again.
The original model of the stages of grief have been expanded in this article I found.
- Shock stage: Initial paralysis at hearing the bad news.
- Denial stage: Trying to avoid the inevitable.
- Anger stage: Frustrated outpouring of bottled-up emotion.
- Bargaining stage: Seeking in vain for a way out.
- Depression stage: Final realization of the inevitable.
- Testing stage: Seeking realistic solutions.
- Acceptance stage: Finally finding the way forward.
I, like many others with children/spouse on the autism spectrum, know this process of mourning, especially the first 5 stages, oh-too-well. It often presents itself as a CYCLE. Not necessarily because of an avoidance of accepting the deck of cards I got or of developing realistic expectations (though sometimes it is!), but because sometimes new things present themselves – things I maybe didn’t know that I was unrealistic, or things where I wasn’t quite realistic enough – that can blindside me and send me all the way back to square Shock. Other times, it might be a former issue that I thought was long gone that rears it’s ugly head again, or a y response that I could go to the bank on getting every single time I presented an x stimulus goes haywire, leaving me looking and feeling like an idiot or liar or both. (Although admittedly, sometimes that unpredictable ‘if x, then y’ outcome is favorable and provokes a different kind of shock!) Because of the constant unpredictability of extreme behaviors and the lack of communication skills, this cycle gets set off daily, and often. A meltdown doesn’t even have to ensue. But the constant effort of preventing a meltdown, or the constant reminder to stop taking literal comments personally, fuels the roller coaster’s engine. I feel like a mouse in its wheel running so hard, but getting nowhere. I dismount, just to remount on the same wheel in the same place and run again.
At the peak of “This Stinks” mode, I hear the voice of our family counselor repeating in my ear “this is the life you’re signed up for and you can’t get stuck here. You have 2 kids that are depending on you. It’s time to move forward.” Cheap shot for motivating me…but sometimes perspective is all I need and I’ve heard her say it enough that I don’t have to call her to hear it anymore (though sometimes I forget and I still call her and then she says it again and I’m like, shoot, I knew that already! Never mind, carry on, have a nice day). Over time, this grief cycle may not necessarily approach zero, but I can see the circle shrinking, stages being skipped, and soon I’ll learn to zip around the bend quicker with each new shock that comes along. I’ve already mastered with the whole peeing on the floor thing…once I learn it has happened, I can go from Zero to Acceptance in less than 30 seconds! There’s no shock or denial, anger and bargaining is more from the owners or cleaners of the floor, depression looks more like embarrassment for whomever had to witness it.
As I sat in the parking lot after a good weep and a prayer, I took a moment to acknowledge and thank my friend in Heaven. Then I collected myself and made another list of what I’ve gained and have been able to overcome, parenting skills I’ve developed, learning to appreciate the smallest of milestones, massive spiritual growth, appreciating and loving people – all people – the way God loves me, the gift of amazing teachers and therapists leading to marked improvements in The Elder’s development, and all the many blessings I have received on this side of the fence where who cares if the grass isn’t greener….I’ve got the whole spectrum!
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