The End and Some Beginnings

Yes He Knows (about those "hfa/lfa" terms)

Charlie at his favorite diner Actions (like the Return of the Microwave; won't mention it again after this) can speak louder than words. But words can still wield a great deal of power, to get one thinking, to inspire, to hurt. 

As an example in the latter category is this phrase that in the last paragraph of a November 11th New York Times review of Mary Karr's new memoir, Lit, by Susan Cheever:

The seeds of her storytelling had been planted much earlier, back in Minneapolis, when the young Karr was stumbling through college. She takes a job teaching poetry at a group home for fairly functional retarded women. She loves her students’ unfiltered reactions to the power of the poem. “Such a small, pure object a poem could be, made of nothing but air, a tiny string of letters, maybe small enough to fit in the palm of your hand,” she writes. “But it could blow everybody’s head off.” That ephemeral power is also packed into this very funny, very serious book.

Ummm. "Fairly functional retarded women": Where to start?

I've long been wary of using the terms "high-functioning" and "low-functioning" ("hfa, lfa") in talking about Charlie, as these terms only provide the barest one-dimensional sense of the person he is. As Dora Raymaker and I wrote in 10 autism controversies on

The concept of "functioning levels" has always been used as a way to divide the autism community and to compete for limited resources, with some parents saying that their "low-functioning" child is totally unlike an adult with Asperger's, and that "severe autism" should be considered a completely separate disability. But the very notion of functioning levels is an ambiguous and even amorphous concept. What "high-functioning" and "low-functioning" mean is much less precise than those terms are often taken to suggest. HFA -- "high-functioning autism" -- is stereotypically associated with being at the "mild" or "Asperger's" end of the spectrum, and LFA -- "low-functioning autism" -- with having "severe autism." But what is "functioning" based on, after all: speech or verbal ability? IQ scores? The ability to appear non-autistic? Academic ability? Adaptive functioning? Just because an individual is of above average intelligence, gets into college, and so forth, does not mean that that individual might not struggle to have a job, be in a relationship, and live on her or his own. Rather than discredit the experiences of autistic adults as having "nothing" to do with that of a "severely" autistic child, it's important to see how there are many similarities, in responses to sensory stimuli and in difficulties with communication, and how the concept of the autism spectrum helps our understanding of autism.

Jim and I know that Charlie is going to need supports throughout his life and that he has a whole lot of challenges due to his neurology, his cognitive challenges, and much more. Neither of us have on any rose-colored glasses and Charlie's past year of difficulties at school and in general have highlighted the extent of what he faces throughout his life, and of what we, as his parents, must face and think about. Charlie's new school is a center for autistic children aged 3 - 21 only; it is a more restrictive setting, although the situation at his now former public middle school (the blue plastic head thing, for a start) was heavily restrictive in and of itself. With Charlie now in such a more restricted setting for his schooling, Jim and I feel the onus even more of taking him into the world, of him being out and about in the world.

And that's why reading phrases like "fairly functional retarded women" galls even more than it does. Call one over-sensitive, but one starts to imagine bystanders looking at one's own child and thinking "there goes a fairly functional retarded young man." I can't decided (not that I really want to) which word rings more harshly, the "r word" or that word "fairly," which might have been used to blunt the negative connotations of the "r word," but has a damning effect of its own. Are these women being thought of as "functioning lite"? The small excerpt from Karr's book suggests that they are seen as uncomplicated and, with their "unfiltered reactions," somehow "purer"=---a not unusual reference to the intellectually disabled as being somehow more attuned to a more authentic, simpler, truer experience.

I have caught myself many a time suggesting that Charlie experiences such. I can't say whether or not such is true but do think that his possibly sensing such further speaks to how much Charlie indeed senses, intuits, understands, gets.

Mindful of his awareness of the big Monday ahead, Jim and I were very watchful of Charlie Saturday, and all the more so because it was a very wet and rainy day due to a Nor'easter. Charlie and Jim still got in a bike ride and then we drove to a not too near us public library, to retrieve a book. It was only 3.30pm when we got home but Charlie was already asking ardently for "diner."

We actually hadn't visited his favorite diner for weeks. The last time we drove to it, Charlie had gotten as far as the door and said "no, no" and been very agitated. He had not asked to go since. So Jim and I raised our eyebrows at his request and said we could go but, it was kind of early.

Charlie assented to another bike ride, as the rain had stopped. He helped himself to a snack when back and Jim decided to go for a run to the park. Charlie consequently had to wait before getting his diner request: He first stayed inside and on the couch, and then went down to wait by the car, and then in the car. Jim came back and, around 6.15pm, we headed to the diner, Charlie calling out this way, that way. He ran into the restaurant and found his preferred booth empty. He ate the saltines that came with Jim's and my bowls of soup, and a couple of spoonfuls of Jim's soup (Manhattan calm chowder). He polished off his cole slaw and all of his hamburger (both well ketchuped) and half his fries. Back home, he was exuberant---skipping at times---for the rest of the evening, pacing animatedly back and forth as the Disney CD played.

He'd clearly wanted a return to his old haunt and glad he could tell us.



I guess it's what you make of it. Functioning levels give people some idea of not just cognitive but also social, self-help abilities.

Ree htt:// refers to Mike (her bro) as being "retarded". In her opinion and her families that just what is... period. They love him, he has a huge social/community group, and if you go back a few posts on her book tour he's right there with her.

Personally, IMO the posts where she talks about him, shows how she loves him. Makes any word she uses to describe his Down Syndrome.. irrelavent.

I have to deal with the "fear" that my youngest is going to "melt" b/c truth is that's very common. We don't get upset over this. We simply show that it's not always the case. We don't lecture, we explain, and we let him... like Mike... teach.


I have my fingers crossed in a variety of contortions, wishing Charlie success at his new school!

Labels are a struggle -- they function as shorthand, but mask the complexity of the person being labeled. I need to people to understand that my son needs accommodations, but not make assumptions about limitations. I guess I don't have a good answer -- I mostly want people to keep an open mind about what Leo can do, and who he is, and not dismiss any of his options because of a word.

Leo's current school is a segregated site, but it's not officially an autism school, it's a "behavioral" school.

Regarding the Pioneer Woman, I don't know her -- only that my friend Skye says "she's HUGE" -- but it sounds as though she's not aware of the R-Word campaigns. My worry is that popular bloggers always have detractors, and that she's unintentionally giving the ignorant gremlins ammunition. But how wonderful of her to demonstrate such love and inclusivity!

karen d

It is so complicated. I find myself using the "HFA" term to describe my son because I'm so desperate for him to be able to have access -- too many doors have been closed on us due to his dx. But the truth is, despite his academic gifts, he has lots of challenge areas and I cannot get him regional center status because they don't think he's disabled enough.

I also think that if adults on the spectrum say those terms are offensive, we need to take their advice and stop using them. I cringe when I hear "HFA" come out of my mouth, but I honestly don't know how else to get outsiders to give Pete a chance. Sad but true. If people would just get to know Pete (or Charlie), they would see how cool he is and the designations would be irrelevant.

Kristina Chew

I usually end up with complicated mouthfulls of words to describe Charlie; I don't want to under-estimate the extent of his challenges, but also want to make it clear that he can do much more than might be thought.

Jim read this and pointed out to me that in some ways the new school will be LESS restrictive---Charlie will be able to use the whole building, for one thing. Post to come about that.


I don't use these terms at all. My son has autism. Period. If anyone described me in terms of MY functioning I'd be insulted. So I don't do it to other people.

I'm really looking forward to hearing about Charlie and his new school next week!

Bonnie Sayers (autismfamily)

I tend to use the HFA term since Matt and Nick are on opposite ends of the spectrum and makes it easier to share about each of them. If only one was on the spectrum I would not be using labels - well I do say non verbal or not toilet trained for Matt at times.


As you've said labels are very one dimensional, and in the autism community the HFA LFA labels are causing a lot of divide, but competion for services is not the only one it facilitates. The biggest divide seems to me to be debate about what autism is, and whether it should be "cured" (admittedly my view is from outside the autism community, so I could be wrong).

Dimitri's diagnosis is severe intellectual disability, and this is what I tell people, with plenty of pride and a challenging look. I think if I shied away from it people would think I was embarassed or ashamed, or in denial - we are supposed to brag about our kids, and IQ is highly valued. My kid has a low IQ - so what! He is smart, funny and has a very complete and complex personality. (the temptation is to say it's impossible to test his IQ, but this is half baked answer - his value as a person is not dependent on his IQ or his level of functioning)

I would rather challenge peoples idea of what severe intellectual disability means, and also advocate for services, and make sure people with severe profound or multiple disabilities are not forgotten.

There is a huge tendency for labels to lower peoples expectations of a persons potential, and this can become not only a self fulfulling prophecy, it can also be used as an excuse to save money within education ("he doesn't need an AAC device, he can communicate what he needs"). On the other hand, "potential" can become a double edged sword. My son has potential and will continue to learn, but if he didn't change one single bit (or if he regressed), that is OK too. Again, his value as a person is not dependent on his potential.

This comment is getting too long! There are some other things I've experienced as well, regarding how we don't all use the same words to mean the same thing (according to generation, culture, education, first language). The spoken and written word are often very limited.


Jim's point about the new school being less restrictive strikes a chord with me -- it's analogous, perhaps, to how we felt when we fenced in our back yard. A fence, how restrictive! But it freed us from having to hover within arms-length of our flight-prone daughter, who could now play in the backyard without being so constantly dogged by a hovering adult in a state of high alert.

Re: labels & shorthand & such -- wary is a good basic stance! The one metaphor that I sometimes like well enough to use is the one that compares the autism spectrum to a swimming pool, as in "swimming in the deep end of the autism spectrum." I think it manages to convey both similarity (the pool) and difference (the depth), without necessarily lining folks up on a one-dimensional continuum. Then again, no metaphor is perfect.


On one level, our kids are as different as can be. My son has AS, and talks a mile a minute, with a vocabulary at the college level at 7. His measured IQ (I always say measured because I question whether everyone's IQ is accurately measured) is in the "very superior" range. No one uses the "R" word about him. I rarely hear the "high functioning" label either, perhaps because people don't want me jumping down their throats, but possibly because, at least at the moment, you can't really look at my very verbal boy, and say that he's high functioning. His disabilities impair his functioning to an enormous extent, causing him to be taught in a separate setting, causing him to avoid many community activities, and impeding his learning academics so that in second grade he's reading below a kindergarten level.

And maybe it's just that I appreciate your writing and your insight so much, but I feel like Henry and Charlie have much more in common than they have that is different. All my son's incredible language skills don't help him when he's having a panic attack/meltdown, and it seems that in those moments, the two of them go to similar places. I feel much less in common with parents of very high-functioning AS kids who do fine in school and in the community.

The insights I've gotten from your writing are completely relevant to Henry, because the sensitivities, the reactions, the anticipation, and the delayed feelings are so very similar. I sometimes worry that I might sound like I'm communicating "I know just how you feel" and I don't mean to: of course there are huge things that separate our experiences, but there is much that resonates. It's not a small difference to have facility with "typical" language or not, but it's one difference where there is so much that is the same.

Here's hoping that, after the usual sort of day 2, the new placement is as much of a success as Henry's new placement is now, with teachers and staff who want to understand him, and the training and experience to actually understand. And most importantly, moving on from those who don't understand, don't want to, and have written him off.

a parent

When we were first wondering about getting tested about 7 years ago I remember reading that positive longterm outlooks were tied to IQ. At the time I was comforted because I knew that my son was very smart. Looking back on it I see the problems with this concept. How do you measure IQ in a real way with a kid that has communication issues? How do you define positive longterm outlooks?

The same thing can be said about HFA and LFA. They are shorthand for saying what level support a person will need thoughout their lifetime. Personally, I don't think anyone can make that prediction about my 10 year old son. He progresses by breakthrough when he is motivated to move on. When and what type of progress he will make over the next few years, much less over his lifetime, is just not predictable.

I can tell you a lot about my son. I use "significantly autistic" and "lots of communication challenges" and phrases like that. I will not classify him as HFA or LFA.

Club 166

I sent Ree (aka "The Pioneer Woman") an e-mail, asking her about her use of the "R" word to refer to her brother, and got back a very gracious reply.

She related that she first used the word on her site to show that living with someone with a disability is normal, and not something tragic. She said that although most of the mail she received was positive feedback, she decided to stop using the word after reading how some readers were upset about it. She said that although it has been a while since she has used the word in posts on her site, she has not gone back and scrubbed it out of old posts.

All in all, I thought it was nice of her to bet back to me at all, much less within twelve hours of me sending the e-mail. She's on the road with her family, in the middle of a book tour (she's published a cookbook).


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