Tuesday, October 03, 2006

The high cost of "high function"

I have followed, with interest, conversations among fellow bloggers about the use of the terms "high functioning" and "low functioning" as descriptors of autism. They're not categories that I tend to use, because I think they're arbitrary, artificial constructs that are too situation-dependent to be of any real value: How high is "high"? How low is "low"? And how are we defining "functioning," anyway?

Even if we look at particular skill sets in isolation, it's difficult to clearly define what constitutes "high" and "low" functioning. Take language, for example. On the surface, we would assess a child who is able to use language conversationally as "high functioning" and one who is not as "low functioning," with a broad spectrum of ability between the two. Right?

I'm not so sure.

I began to consider this issue when I read Cammie McGovern's Eye Contact, a mystery novel set primarily in a school. Several characters in the novel are either identified as autistic or described in a manner that implies that they are on the spectrum. One boy, identified as autistic, uses very little language. His limitations in that area are fully recognized by other characters and he has staff who work closely with him as he successfully manages each school day. A second boy is articulate and verbose and, though he's not specifically identified as such, he appears to have Aspergers. Because he is smart and verbal, he is frequently left alone to navigate complicated and confusing social environments at school. As a result, he is bullied and assaulted by classmates.

I wonder: which boy has "higher functioning" at school?

I look around my real-life work environment and consider two young men, Christopher and David, who are in the incoming class of college students. I don't have any specific information about their neurology, and my conclusions about them are based only on observation and speculation. However, what I see tells me that Christopher may have some sort of language processing disorder. His writing is clear and precise, but conversations with him are slow. When asked a question, Christopher pauses, his eyes scanning the ceiling as if he's searching for a cue card stashed there. His pauses last an unusually long time, and are typically followed by a brief answer - sometimes as brief as "yes" or "no."

After a single conversation with Christopher, other people on campus can (and do) clearly recognize his challenge and make reasonable accommodation for him by slowing their rate of speech, giving him more time to process his response, and, when possible, providing him opportunities to converse through writing instead of speech.

David, by contrast, is quick with verbal comebacks and retorts. His answers are so articulate, in fact, that it's easy to get the impression that their acerbic bite is intentionally designed to insult the recipient. David talks at length about his areas of interest - his esoteric collections of things foreign to most college-aged people. He seems indignant and self-righteous when he insists that his peers must know what these things are, and that only an imbecile would lack such knowledge.

David enjoys playing his music (Peter, Paul, and Mary; Arlo Guthrie - not the standard Dave Matthews college student fare) frequently and loudly, much to the chagrin of his neighbors, who have complained to their Resident Director. When the RD asked David about it, he responded that things were going well on the floor. He knew this, he said, because every time someone had a problem with his music, they told him and he turned the music down. He reported that he got this request three or four times a day, and each time he happily obliged.

David was unable to generalize from the specific in this situation - to draw the conclusion that if his neighbors were asking him to reduce his volume four times a day, they would prefer that he keep his volume lower all the time. He was also unable to read the nonverbal cues from his neighbors, which most certainly indicated their decreasing patience with his continuing noise.

Again, I wonder: As Christopher and David progress through their first semester at college, who will be more successful in the world of college housing - slow-talking, less verbal, "lower functioning" Christopher, or fast-talking, more verbal, "higher functioning" David?

I thought about it a third time with an example much closer to home. Bud is verbal, but he continues to struggle with sustained conversation and he often relies on mitigated echolalia and scripts to make his points. Our blog-friend Owen, on the other hand, is very verbal and would be considered "higher" than Bud on the scale of verbal functioning.

Both Owen's mom, Tara, and I were nervous about our sons' transitions to school this year. Bud made the transition well, with extraordinary support from his teacher, classroom aide, and special education staff. Owen, on the other hand, was forced to withdraw from school after experiencing not just a lack of support, but also actions that made his transition more difficult - and, ultimately, impossible.

Clearly, one primary difference is that Bud is in a student-centered, collaborative school system and Owen was not. Beyond that, though, I wonder to what extent the staff of Owen's school underestimated the level of support he would need because they focused too much on the strength of his language and failed to recognize the challenges of his autism. By dismissing him as "too high functioning" to require significant accommodation, they created a dysfunctional - and now, a non-functional - learning environment for Owen.

It's examples like these that make me reject the "high-functioning" and "low-functioning" descriptors and regard them as inadequate, ineffective, and inappropriate. And, I have to say, if these are the classifications that will drive the services my son receives, that will shape the responses he gets from other people - if the degree of accommodation, understanding, collaboration and compassion that people will be willing to proffer will be based solely on their assessment of his "functioning level" - then I can sum up my philosophy in two words:

Aim low.

44 comments:

fiona said...

Wow. As always, you hit the nail on the head. Heck, a whole row of nails on the head. I am new to Owen's blog and I am outraged for him. He looks so happy now that he's home! As always, thank you.

Kristina Chew said...

I continually try to excise and debate these terms in my head----Charlie, with his limited language, cannot do a number of things (including being in an inclusive classroom setting) and can do some things very well, quite beyond what is "functioning" level would suggest. As Charlie has always been "minimally" (if not, in his younger days, "non" verbal), the "low" label has always hovered near him. And it is somewhat ironic (if not very ironic, perhaps) that the more speech Charlie has gained, the more certain obsessions and anxieties have grown.

And then in Eye Contact, the character who is "recovered" from autism still has plenty of struggles, and in need of many supports.

Lisa/Jedi said...

I agree wholeheartedly with your assessment of the "high" & "low" functioning designations. B is very verbal- has always been- but I worry very much that this facility will be generalised by others into mistaken assumptions as to his other abilities. Fortunately B is also in a child-centered school & getting a lot of support, but he's still having a rough time transitioning this year. The situation you described with David is conceivably something that could happen to B & it does worry me...

ballastexistenz said...

If the word "inclusive" is being used to mean "a place where someone has to be able to do a certain amount of things to go there," then it's being used inaccurately.

Natalia said...

I left my previous job after making a series of "typical autistic" social mistakes that were sort of one of the catalysts for me being involved in some really ugly department politics.

I asked a psych professor I knew (who sort of knew about the politics) "where would a person go to be dx with Asperger Syndrome?" and he said "why?" and I told him and he said "you can't be autistic, or if you are, you are REALLY HIGH FUNCTIONING."

Yeah right, and I was really functioning in my job, too?!

Wendy said...

While I want C to get the help he needs, I also want more than anything in the world for him to be more verbal. He can talk - he has hundreds of words - but he mostly labels objects. His only real expressive language consists of, "I want _____." It's extremely frustrating for both of us - I never know when he's hungry, thirsty, tired, happy, sad, hurt or sick. He mostly communicates these feelings by screaming...and I don't always "get" it.

Lately I've been very depressed because it seems that no matter what we do to try and help him, it doesn't work. I find myself extremely jealous of parents whose children are verbal.

So would I trade the situation we're in now? If C were to become (more) verbal, but that would mean I would have more problems with a school system that assumes he's "higher functioning" and therefore may not need as much support, would I make that trade? Absolutely. School systems can be dealt with, IEP's can be called upon and revised if needed but C's life (I believe) will be much more difficult and challenging if he can't express himself verbally.

MOM-NOS said...

Wendy, point taken. I don't mean to suggest that being "less verbal" is better than being "more verbal." (Though I admit to being a little snarky in my concluding paragraph.)

What I'm trying to say is that I don't think there are universal standards that define the "Good Kind of Autism" and the "Bad Kind of Autism." All of our autistic children face challenges, and their challenges need to be acknowledged, addressed, and accommodated no matter what their degree.

Wendy said...

I know. I'm sorry. I'm just feeling a bit down lately.

And you're right - all of our children need and deserve services despite their level of "functioning."

for what it's worth said...

MOM-NOS,
With your permission, I would like to print off this particular entry of your blog with comments.
I met with a colleague over the weekend who has a young girl of 7 in her class with autism.
The Cumulative file the previous schools have sent has label after label, and assumption after assumption. I would love for her to be able to make up her own mind as to this young lady's capabilities. I think this current blog will give her thoughts to ponder and something for her less than supportive administration something to chew on as well.
Would you let me know if that would be alright. I'll check back later today.

MOM-NOS said...

FWIW - Permission granted. Thanks for asking. I hope it helps!

for what it's worth said...

Thanks so much.
And PS. regarding Owen...is it not mandatory that the school district provides a program for this lad? Our province has a policy that, an educational program must be offered to all children between the ages of 5-18 regardless of disability or academic level of learning. If Owen were here, and his placement had not been successful, then it is up to the district to make it so it is or find him a spot where his needs will be met. Is that not a standard of education in the US? I also found Kristina's comment interesting... here, any child can, and is facilitated into an integrated (regardless of "disability")classroom whenever the parents request or if the consultants utilized in the school system feel that the child would benefit. Our MP ( equivalent to your senators I think???) has a son with Autism who has no oral language. His son is integrated into a fulltime Grade 4or5 class. Facilitations are made so each child may attend the school of their choice ie. the neighbourhood school.( Mr. Lake has also lobbied successfully for a number of educational policies on a federal level regarding children with special needs. Again, is there no Federal policy on education like that in the US?

Jan said...

I have been discussing this very matter with Dan, our wraparound behavioral psychologist.

I believe that because our child had a non-diagnosed condition (profound tongue-tie) at the time of his autism diagnosis, that if he were re-diagnosed he might be considered 'less autistic' than they originally thought.

Dan said, "Let it go. If they rediagnose him he will lose all of his services and he needs them."

I feel this need for our son to be accurately diagnosed, but Dan is right, something is working well for Charlie and let's not rock the IEP boat.

Thanks for the post today, it said something that I really need to hear.

Daisy said...

This one hit close to home. Amigo (age 14) has Aspergers, a "high-functioning" form of autism, and he is considered to be aon the "high end" of the Aspergers spectrum. We have struggled to get the district to realize that they need to recognize the diagnosis and provide services. Last year...but that would take several posts to describe.

JenF said...

Like Daisy's Amigo, my Ky has been diagnosed with Asperger's though it was phrased more along the lines of 'this will get him what he needs'. Ky is at a point where I think different people will either see it or not. Thankfully, our school has been wonderful.

KAL said...

MOM-NOS, I really enjoy your blog. You always write such thought-provoking posts and this one really made me think about the disparity between my twins and how one seems more "low functioning" than the other, but also how it's really not that black and white. Thanks.

Sam I Am said...

I am so glad you wrote this wonderful post. It really hits it on the head. Our Sam had no language until 3. His words now are starting to flourish, but so much of it is scripted. He was much "lower functioning" as told to us earlier on, and we have been inching towards "higher functioning" only because of the language usage. What has gotten harder is that now that he has words, our tantrums have gotten worse, stimming more, routines greater, because it is almost harder for him now, and he needs more structure and comfort since he is misunderstood more by adding this new tool, called words. I know it will get better, but I know it is so hard for him now. Before it was almost like a mime game in communicating. Now we add words that he doesn't always understand, but repeats, and then gets frustrated with because it is another thing we can't always understand. So, I struggle with "language" being a main tool of separating (not my choice of words) "lower" and "higher" functioning. This is really healthy discussion for the community.

Cindy Ericsson said...

Thank you for once again expanding my thinking on the labels and what they might really mean to our children. My son has a PDD-NOS diagnosis, has an outgoing personality, is very verbal, etc., and is often described as "high functioning." Yet when we were having him evaluated by our public school system last year to determine what services he would receive, his (very experienced)teacher stressed that we answer the questions based on worse(not better) days. She wanted to make sure that he would "get what he needs."

Having a child with different abilities makes me look closer at the problem of playing to the child's strengths while still developing the delayed or missing areas. Like the rest of life, it's an incredible balancing act, and the center seems to shift daily.

Mom to Mr. Handsome said...

I think this is your best blog yet.

Gabe was diagnosed "low" by our school district when he was 22 months old. The quality of services didn't change, high or low. Our district just wanted to "box him up and ship him out" a one size fits all mentality.
I hope one day soon that they will be able to see how unique each of our children are, irregaurdless of the label they want to place on them.

Kristin

Anonymous said...

Thank you for another important post, outlining the pitfalls of autism spectrum labels. Owen unfortunately found himself outside of the circle of support that some of his autistic counterparts fit into.
I met with a caseworker today who shared with me the experience of one boy she knows, with Asperger's. His teacher was careful to always include him, support him and teach him in ways that he could understand. She was always ready to embrace his differences and honor his place in her class.
We were not so lucky. But I believe in moving foward, in peace and finding a new way to teach and support Owen. So far he is enjoying his time at home and is just as eager as ever to explore and discover the world. I am very grateful for that.

MOM-NOS said...

for what it's worth - The short answer to your question is yes; the school system is required to provide adequate accommodation ("free appropriate public education") to children with identified need. The problem in Owen's case was that the school administration and Owen's family disagreed about the "appropriateness" of the staffing and services he was receiving. My sense is that it got further complicated by Owen's teacher's dishonesty (saying that she had done things she hadn't, or hadn't done things that she had.) I think it became such a complicated mess that Tara opted to walk away. (Tara, did I represent that accurately?)

The law also mandates that children should be in the "least restrictive environment" possible, though, of course, the "to the maximum extent appropriate" qualifier can be the subject of debate in individual circumstances.

More information is available here.

for what it's worth said...

Thanks for the answer. Sad to hear about Owen's situation. I have to freely admit, there are teachers out there who want no part in facilitating student's with differing needs.( Anything from gifted children to children with severe learning diffiuclties). I hope one day that every child is offered the education that they deserve regardless of fiancial, medical, learning style, or even country.
I think, blogs with comments and writing like yours offer parents who might not otherwise feel as though they have many rights, see that not only are there rights, but there is support for them from parent's and educator's alike.
I appreciate your blog for this and for the wonderful chronicling of your journey through parenthood.

kyra said...

see, this is just the thing that troubles me about the high vs. low functioning termology. my son uses language until the cows come home and then he carries on, coming up with creative ways one could do any number of things. tonight it was how one could return pluto the the realm of this solar sytem's planets ("i know! maybe it's the asteroid belt! if we were to insert a second asteroid belt between the outer gas giants and pluto, maybe that would explain why it's so differnt, the way the asteroid belt that we do have is between the inner rock planets and the outer gas planets and then it could be considered a planet again" etc etc.) but this is a guy who only recently has been able to experience being around another child, and i mean even ONE OTHER YOUNGER CALM CHILD as positive and even the tiniest bit fun.

the terms don't mean anything and yet, they can mean so much when it comes to how much help the child and the family are able to get from our current 'systems', important help, critical help.

ugh. it saddens me.

Sam I Am said...

So tonight I visited that lovely "Autism Speaks" site. Check out this article written by Alison Singer. I must admit, that my heart hurts even more for her daughter, and I wish I could adopt her.

http://www.autismspeaks.org/whatisit/singer_commentary.php

neil said...

I noticed in comments that you said '...All of our autistic children face challenges...'. I recall the time I was at a school council meeting at my daughters specialist school, when someone described their child as autistic and the principal of the school said that none of the kids in the school were autistic, sure they had autism, but all the students were just kids with some issues and that really opened my eyes. I now look at my daughter exactly the same as my other kids or anyone elses, she's not 'autistic' but does have issues we are working on. I don't know if thinking this way would make a difference to anyone else, but it sure did for me. Our kids are just kids like any others.

MOM-NOS said...

Neil, thanks for your thoughts. I understand what you're saying. My perspective on the issue is actually a bit different, and I use the term "autistic" intentionally. I've written about my reasons for that here.

MOM-NOS said...

I should also point you to this post by Jim Sinclair, which is really what made me start to re-think my language.

Anonymous said...

hiya,

my name is jamie, i am 17. What you write her make me think because recently this has happend to me.

My speeck (the content, not the exacution) is often good, but i struggle alot with things like cooking meals and remebering to do things. I also struggle with understanding what people mean.

a long time ago they though i had aspergers / autism. but because my speek was good when i moved away (i live in fostercare) my new foster parenst said it wasent correct and dissmissed it. later foster carers and myself didnt know and it caused lots of problems.

An irony is, there is an autism unit at my school and they spotted it two years ago when i started going there.

Right now i am waiting at a "specisl needs center" which is totally wrong for me, for an assement which niether of the two counties that i have lived in will do. one keeps saying its the other responsibility.

i am trapped here missing school and a place i have been offerd at the unit untill they sort it out.

all of this because i could say stuff well. all because i had a normal act, that people knew i was doing, but didnt want to think why.

Make me angery.

hopeing this makes sense.

^licks^

jammie & lion

~AspieMom~ said...

Thank you for this post. It is well written and asks a very important question.

So far, my son has been doing well in school, but I am constantly watching and waiting for the tide to turn. That sounds so morbid...but I'm sure many moms and dads out there know how I feel.

rainbowmummy said...

Very well said!

Anonymous said...

Simple: "High-functioning" is adaptive enough to learn what most people know intuitively. As for the being bullied thing, I for one am glad I was given hell as a child. It thought me cynicism, something that has served me well wherever it was applied. Some people are confused and depressed when they don't understand what someone is saying-I've come to realize that it is all basically meaningless.

Sirenity said...

Wonderful post!

Dwight said...
This comment has been removed by the author.
Binxcat1 said...

OK LADY... WHO ARE YOU AND HOW DID YOU GET IN MY HEAD! This post sums up EXACTLY the problems we are now facing... we are dealing with multiple cases of "Well, he musn't be THAT bad"-itis... both from the "authorities" and sadly even our own family. I mean WTF is that supposed to mean? How do they think I will respond to THAT pearl of wisdom. When our son was diagnosed we were given a letter... it said "the diagnosis of autism"... no high or low or middle range... just "autism"... so I always just said, "my son is autistic"... it has only been recently that I have used the term High Functioning when speaking to people who have no idea or their only experience of autism is "Rainman"... or completely non-verbal. At the end of the day if the "label" gets your child help use it... but it seems to be a double edged sword... that label also seems to have absolved the education system of any responsibilty of actually teaching my son. Sorry feeling just a little bit cynical today.

Anonymous said...

Well, I wish I had found you sooner, but I found you now and now was almost perfect. I'm comforted by your understanding if not a little jealous of your abilities.

I just finished part II of a 2-day, 5 hour PPT with my son's school where I have finally succeeded in having his eligibility to receive services restored and an IEP reinstated. This of course after almost 2 full years that, well I can't fully face how detrimental it has been for him, especially the bullying, but it has been a long road to get here. I did everything I could, sought outside evaluations, changed his diet, tried to persuade teachers to follow my lead. I tried.

Unfortunately what it took, was for the situation to worsen, for a little more disfunction, for him to scream at the top of his lungs with a piercing high pitched head splitting volume filled with such a passionate expression of need that no one would be able to deny they understood him. And with this, he did it. He got the ball rolling.

I wish I had been more perceptive, more articulate, more persuasive so that I might have secured services before it got to this...but at least we got there. He is smart, articulate and "quirky" but there is small comfort in high functioning.

MOM-NOS said...

Anonymous, thanks for your kind words, but really - abandon the jealousy. The blog makes me appear to have more answers than I really do. It's all in the editing.

I'm glad to hear that your son is getting the attention he needs, though I'm sorry to hear it took a very difficult situation to make it happen.

I think it's worth it, though. I have been thinking about this post a lot this month, and four years after I wrote it, I think it deserves an update:

"Higher functioning" David did not persist past the first semester of his sophomore year.

"Lower functioning" Christopher graduated this month, after four years of being actively engaged in the college community.

Anonymous said...

My four year old son was diagnosed with Aspergers this summer. "High Functioning" is the first words out of many people's mouths when I tell them about the diagnosis. But how I wish I understood that he has autism last summer when I was so frustrated with a child who had taught himself to read, but was so difficult to potty-train. That is the pitfall of assumptions about kids who can "pass." I wish I had had more patience for us both.

Salty'nSweet said...

I agree with your post. Wow, what a boring way to start a comment. :) I was diagnosed as having NLD about six years ago, which apparently doesn't have classification as "high" or "low" functioning officially, but according to what the school board thinks of my test scores, I don't have a learning dissability. I may do well academically, but social stuff is my problem, and of course the people in charge don't see that.

Amy said...

WOW! I never thought of it that way! That is one of the biggest issues I have with my son. People expect more out of him then he is able to deliver b/c he is very intelligent and charismatic (plus tall for his age) so people seem to assume that he is older than he is and don't see that just b/c he can fit in well enough to get along in the world, he still has many sensory issues as well as the OCD and anxiety. They don't cut him any slack at all. This all makes sense with the way you described this. We homeschool him b/c the school did not have best interest in mind at all.

Anonymous said...

I know this is an old entry but I felt compelled to comment anyway.. My daughter is 10 with aspergers so she is 'high functioning' and it does have its drawbacks. Because she is smart and articulate she is high functioning and that seems to overshadow the fact that she struggles with noise, people, social situations, is extremely literal, and has little understanding of some things. She has the emotional maturity of a 5 yr old.

And when your child is high functioning people are not understanding. They see my child as rude and spoiled and we are just 'overindulgent'. It's very frustrating bc I know she sounds horrible but when she is stressed her tone gets bad even if she can maintain everything else the tone becomes horrible. She cant help it. Unless she is very relaxed she sounds rude and angry adn she is only relaxed when at home.

ross rubin said...

I myself, have ppdnoss and I am 33 years old. I've struggled all my life to fit in. Looking so normal and people not realizing I have a severe disability, but am so high funtitoning and aware of my surrounding that I can try to hide my disability as much as possible by appearance. I really stuggle with sensory issues, non literal language and ques and transitioning from one thing to another, but am able to be very independent,living on my own, driving, working,etc. I have a tendancy to go in to too much detail in certain situations or overanalyze things and sometimes emesh myself with other people feelings and can't seperate myself from them. I see things black and white, but have an open mind to other people perspectives and can emphasize with them about things but limited by my own view. I feel for these parents and others with this disability. Professionals sometimes don't get how high funtioning you can be and still be struggling so much as somebody lower funtioning. Some tell you these are your strengths and weakness and except them. They don't truly know what a person with this disorder true potential is. It takes years of treatments, phycology, and other combination's of treatments to overcome these obsticals. It angers me when I hear a professional say this person has mental retardation and autism, when your brain with autism is processing the information so differently and things are out of snync. You can't get real accurate test scores on them. I had an iq 20 points differnet from 85 to 105. I could of easily been labled slow too.

ross rubin said...

I know some of the people with aspbergers syndrome and there so high functioninng they almost talk in there own language and are so brilliant,but they struggle to just dress themselves and hold on to a job because they can't socially connect and understand their surroundings. I didn't stuggle with those things,but I struggle with the more complex part of making decisions and being too aware of my surroundings. Needing help with picking out clothes for special occasions,getting advice when things come up with friends or family, keeping up with a lot of money I may make at a job or social situations that I feel I might of caused someone to misunderstand me and need help processing it rather then going to my Mom for support at 33 years old. There is not really any support for us unless your more severe.

dogfordavid said...

Well written and much appreciated. I agree with you and have my own personal examples living under my roof in the form of my two precious sons. Thanks for this post. :)

Anonymous said...

Hi, please can I print this out and show my school!!!!!
My son is 8 and has Aspergers and I am trying to get him support!.
thanks , worried mama

MOM-NOS said...

Anonymous, yes of course. Feel free to print it to share with the team. Please just make sure that the original source is written on the print out. Good luck!!