Term of the Week - High-Functioning, What Does It Really Mean?By Kathleen Fergus,
Saturday January 24, 2009
This weeks term of the week is actually a bit of a cheat, as I was unable to find a concise definition of what "high-functioning" actually means in Down syndrome.
I have heard the term high-functioning used to describe individuals with many different disorders - autism, dyslexia and Down syndrome to name a few. In the interest of getting of clearer picture of what exactly this term means in individuals with Down syndrome, I attempted to locate a clear-cut definition of what this term means. While this phrase is commonly used to describe some individuals with Down syndrome, I was surprised that there is no formal medical, psychological or other criteria defining exactly what makes a person high-functioning. I was also surprised (although I shouldn't have been) to find that some parents object to this term.
In it's common usage, high-functioning refers to someone that is performing above what would be expected of them. Thus the term is actually a comparative term and rather subjective (or based on someone's opinion). It can also be a somewhat simplistic term in that it tends to have an "all or none" connotation - that is a person is either high-functioning or not. In reality, most people (with and without Down syndrome) have a mix of skills and abilities and may be high-functioning in certain areas and not in others.
Some parents of children with Down syndrome (and parents of children with autism) object to the term because they feel that it is far too subjective and often is actually a reflection of society's poor expectations of people with Down syndrome rather than a reflection of the individual's true abilities. Other parents object to the term because it places more value on individuals thought to be high-functioning as compared to individuals that are not thought to be high-functioning.
How do you feel about the term "high-functioning?" Is the term meaningful to you? Would it be more meaningful if there were actual criteria and definitions assigned to the term or am I over thinking this? Let me know what you think!
11 comments:
I can see why it would bother some people. I think of Eva as high functioning, some may not. She is good at imitating, "high functioning" And lower functioning at color matching and recognition. I guess I don't really fully understand the term. She functions as well as anyone else. She just doesn't grasp certain things as quickly, does that mean she's low functioning. She is potty trained, does that means she functions highly? She signs, but not as well as a typical child who was taught the same skill. Maybe. I have met other children who refuse to sign, and they have no known syndrome. I have met some children with DS that have other disabilities on top of DS that make it harder for them to sit up, swallow food, breathe on thier own, are they low functioning. Maybe the term High functioning/ low functioning is realitive to how much you and I as a care giver have to do for them.
I do know that I was pleased when Eva was labled "high functioning" as an infant. Now I could care less what people called her. I just call her my daughter.
If high-functioning means working to the best of one's ability, I'm fine with the term. I don't think that's how it is meant though. I was a teacher before I became a SAHM. Trust me, a lot of typical (don't even get me started on that term...lol) kids aren't high functioning because they choose not to be.
Do I want Lily to be able to do as much as possible??? Of course. I think the first time someone says to me, "She seems so high functioning", I'll say "compared to what?!?!?!"
I love my precious baby no matter what!
It just came to me...I'll tell them she's Lily-functioning! lol
High-functioning really bothers me when people ask me if Aidan is high-functioning or not. He's 3 years old, how do I know what high-functioning means for a 3 year old. As long as he does his best, I'm okay with it.
This is a general term that is often used in the medical community to compare with others of the same age with the same diagnosis. It tells me if a child is functioning higher than their diagnosis indicates. But to a lay person who does not have the familiarity of the diagnosis, they wouldn't have anything to compare. So outside the medical setting, I'm not sure what is meant by it. But I see it as purely a relative term.
I never thought about the term before, but upon reflection I think I do not like the concept behind it. If the term was applied across the board to label every and all of us, I think we would be offended for it takes our individuality away. We are all a function of our parts, our humanity lies in the fact that we have strengths and weaknesses. This is the problem with "labels" they seek to define us without looking at the whole person, and for that reason I think the term is limiting.
This post has touched a chord with me. I've been seeing my son as "high functioning" but when I read your post and the comments, I feel ashamed. In some way, using this term to label my son may be the same as labelling him "retarded". Does this make sense?
What I am saying is that perhaps I need to scrutinize why labelling Gabriel as "high functioning" is so important to me. And your post has led me to deep thought about it.
Thank you.
I don't like it. It makes me uncomfortable.
I want to say more, but it's not coming out right. I'll just stop here.
I think making assessments about how individuals "function" is so disturbing. I also think it is divisive within the T21 community because it creates comparisons and a hierarchy among people. There is enough of that for our kids in the mainstream, why must we also replicate these meaningless (and often hurtful) comparisons among our kids?
The term high-functioning stresses me out. People ask me if we think my daughter (8 months) will be high-functioning or people straight up tell me she will be (like if we insist it enough, it shall be). But what is the difference...will she be worth less if she is low functioning... will I love her less? Nope... just more at risk in this not-so-accepting world she lives in.
This term really hits a nerve with me. When Goldie was a baby, she had severe vision delays, didn't respond to sounds most of the time, plus had some physical delays. My MIL said to me "she'll be fine, she's high funtioning, you can tell" My jaw dropped. That was when I realized she wanted to believe that Goldie was HF because it would be easier for her to accept my daughter and her diagnosis. My MIL has admitted that she would be one of the 90% if she knew her child was going to have "something wrong", so coming from her I knew that comment wasn't a compliment to my child.
My daughter Kayla is definitely NOT "high-functioning". She scores in the 1/10 of 1 percentile across all domains. So what does that make her? Is her life any less meaningful or valued than someone who is "high-functioning"? It just reminds me that Kayla isn't doing things that even younger kids with Down syndrome are doing and if I'm in a mood, stabs me in the heart.
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