Monday, June 16, 2008

Verbatim: Levels of functioning in autism

This very short entry in the verbatim series is from Lovaas (1996). The children Dr Lovaas refers to in this quote are autistic. Italics are in the original, which sits within one of the major autism ABA manuals:

Terms such as high-functioning versus low-functioning children are derogatory and should be avoided.

Reference:

Lovaas, O.I. (1996). The UCLA young autism model of service delivery. In C. Maurice, G. Green, & S. Luce (Eds.), Behavioral intervention for young children with autism: A manual for parents and professionals. (pp. 241-248). Austin TX: Pro-Ed.

25 comments:

Bev said...

Awesome find! I am putting this in my sidebar immediately. Thank you.

Joseph said...

Nice one :)

Steve D said...

I wuuld be very interested to hear Harold Doherty's opinion of this statement, especially after he spent his Father's Day writing a blog post attacking those Fathers who believe differently than he does about what defines a positive outcome for autistics.

Autism Reality NB said...

My reaction is simple. I don't agree with every statement by anyone.

There ARE different levels of functioning. Everyone commenting on this blog site functions on a higher level of communication than my son. There is nothing derogatory about speaking accurately and honestly.

As for Steve D's mischaracterization of my blog comment that is par for the course with Steve D.

Have a good day everyone. Assuming of course that you distinguish between good and bad days.

qw88nb88 said...

Many people have certain areas in which they are "high functioning" and others in which they are "low functioning".

To describe a person with either label ignores either their abilities or their difficulties.

andrea

KeithABA said...

Better get rid of the term type A personality. That might be offensive to some.

Don't forget doing away with Profound, Mild, and Moderate mental retardation. I mean, profoundly retarded sounds very derogatory.

Make sure the schools stop calling it Advanced Placement. I mean the parent's of kids who didn't make it into those classes could be offended.

qw88nb88: Your right, terms like these do ignore strengths and weaknesses. These types of statements are usually derived to provide a general description without getting so detailed.

For instance, an IQ score will not tell you where strengths and weaknesses are either, but it will certainly give you an overall idea about functioning level.

Ed said...

Thanks Michelle,

This is really helpful.

I agree with Andrea.

I think that describing anyone (and especially a child) in a category such as high or low capability, can be a way of not having to be present enough with a person in order to really know and understand who they are and what they can do.

I think that to bring out the best in another person takes patience that is very specific to who another person is and what they are doing. Lots of standard rules of measurement don't really allow for that.

I see lots of societal judgments made that say a low functioning person can't provide much of anything that is valuable and a high functioning person that isn't doing all that others think they should isn't willing to.

It seems to me that as long as a society and their education systems are geared toward exclusion they will use tests to justify their exclusionary ways.

Autism Reality NB said...

Ms Dawson et al

If you do a Google Scholar search on Ms Dawson's mentor Dr Laurent Mottron you will find that he accepted the low functioning/high functioning terms although the subjects of his studies and articles are usually described as high functioning. Apparently he prefers to study High Functioning Autistics, Aspergers and savants.

In Proper Name Hypermnesia in an Autistic Subject, BRAIN AND LANGUAGE 53, 326–350 (1996), Mottron, Belleville and Sipt, though the good Doctor and his colleagues did actually refer to low functioning autistics:

"An a posteriori score for autistic symptomatology
during childhood of at least 16 is required for a diagnosis of autism. Upon examination, NM obtained a score of 111, which meets the criterion for high-functioning autism (normal subjects, 220; low-functioning autism, 120; Rimland, 1971)."

Joseph said...

There ARE different levels of functioning. Everyone commenting on this blog site functions on a higher level of communication than my son.

Here's some news for you Harold. Everyone commenting on this blog site functions on a higher level of communication than any child, NT or autistic.

Bev said...

KeithABA,

Here is a 2001 article discussing the interest in removing some of those labels:

Luckasson, R., & Reeve, A. Naming, Defining, and Classifying in Mental Retardation (2001 Journal of Mental Retardation, 39 (1), 47-52.

Self advocates have been active in the replacement of the term Mental Retardation with Intellectual Disabilites. This is reflected in the name changes of major entities including The American Association on Intellectual and Developmental Disabilities (formerly American Association on Mental Retardation).

While this is not seen as an ideal replacement, it is preferred to the former.

Oh, but then you were just being facetious, weren't you?

Michelle Dawson said...

I'm interested in which instruments Mr Doherty wants to use to rank all autistics, the threshold(s) he would use, as well as the age at which he would permanently assign this ranking.

E.g., how does Mr Doherty rank the communicatively competent autistic children in Keen (2005), Keen et al. (2005), Pollack et al. (2008), etc. Then there's the question of what would happen to the outcomes of these communicatively competent autistic children (or any autistic children) were they regarded and treated as though unable to communicate.

And how would Mr Doherty rank this autistic individual? Or possibly, in Mr Doherty's ranking system, savant autistics aren't really autistic at all.

In the autism literature, not only are there huge discrepancies between scores on commonly-used intelligence tests in autistics (e.g., Magiati & Howlin, 2001), but the threshold dividing scores in the "high-" vs "low-functioning" range varies by more than 2 SD.

Then there's the vast discrepancies found between how autistics score on popular tests of intelligence versus on popular tests of adaptive abilities--which are often used as measures of intelligence in autism. See Klin et al. (2002; 2003; 2007).

For Keith ABA and for Mr Doherty, previously popular terms used in the science to rank and classify human beings have included "idiots," "morons," "feebleminded," "high-grade defectives," "low-level imbeciles," "severely subnormal," etc., all of which I'm sure were defended as "accurate" and "honest" as well as definitive judgments of an individual's value, future and place in society.

Fortunately, individuals classified in these derogatory ways have objected, and have taken public and legal action to establish and defend their human rights. E.g., see the work of People First groups, in Canada, the US, and elsewhere.

Finally, Mr Doherty is again emitting his signature assumption that science is just like politics; see this excellent article about how to spot the difference.

bullet said...

So where would my older son be placed in the functioning sets? He will be five next month.
He can:

Count and type all numbers up to 100. He tries to write but reverses some digits.
Understand some simple addition.
Type the alphabet (again when writing some letters get reversed)
Write his name, the names of children in his class, mummy, daddy, his brother's name, the Teletubby characters and copy any word you give him to write.
Do jigsaws really well.
Recognise colours and some shapes.
Draw with quite a lot of accuracy for his age.

High functioning, right?

However:

He is not reliably toilet trained and he only got some idea of it earlier this year. He can do wees in the toilet, not poos and neither at night. He needs prompting and has frequent accidents, usually at least once a day.

He has severe receptive language difficulties and it is very very difficult (impossible most of the time) to hold a conversation with him). He relies on familiar phrases to help him understand, the same things said to him each time and he will often respond in a set way, regardless of whether it's relevant. Eg if you ask him what he did that day he'll always say "play with T", even if he hasn't seen that lad. He has a lot of echolalia still, both immediate and delayed. If he got lost from us in town he'd be more likely to say "Go a 20 a down a number 4!" to someone. He wouldn't say that he'd been "shopping with mummy" for example.

His playing skills with other children, when he does take an interest in them (as most of the time he prefers to do things on his own) could be compared in a "typical" child to that of a much younger child. Simple role playing games, games of hide and seek or tag (where he understands the rules and doesn't just race around, or think that staying where he is, covering his eyes and then shouting out "Ready or Not!" when he's the one supposed to be hiding) are things he cannot understand. He loves games like round and round the garden and peekaboo (I thought peekaboo meant he couldn't be autistic until the mum of a severely autistic girl told me her daughter loves peekaboo) and finds it hilarious when his younger brother hides under a blanket and then peeks out at him. In other words, he is more at home with the games that a baby or very young toddler would like to play with others.

He has very repetitive behaviours, doing the same things as part of various routines.

He uses our hands to get us to help him with a lot of things still, using our hands as a tool.

He has just, in the last few months, started being able to ask for food and drink. When he does this he says "need some hungry".

He cannot - and never has - told us when he was tired, cold, too hot, bored, frightened, in pain or ill.

He has very little concept of Christmas and birthdays. He knows that birthdays mean cake and presents, but not that it's a special day. He can recognise a picture of Father Christmas but show no surprise or realisation it's a special day on seeing the presents. His class did a special project on birthdays for three weeks earlier this year but he doesn't understand what they mean. I had my birthday last month and he wouldn't accept for ages that I was 33 instead of 32. Now he says "mummy a 33. Not 32. Mummy a 32 later." For the first time this year he now tells me, when asked, that he would like some "blue chocolate" for his birthday, I suspect he had some at the "birthday party" his class did as he then goes on to say "T sit a circle and E sit a circle and W sit a circle". However, I have to ask him, he doesn't ask about his birthday or presents or talk about how he feels about getting bigger.

So where does he fit in? On the one hand he is very clever in a lot of ways. And on the other he requires a lot of help, a lot of understanding in terms of what he's trying to communicate or need and with his self help skills (more so than typical children his age).

J.E. said...

Perhaps readers have noticed "We don't need no stinkin' neurodiversity" on the title of Jonathan's website? -

http://www.autismgadfly.blogspot.com/

Bev said...

Oh dear! That wouldn't be the so-called "Royal We" would it?

KeithABA said...

Bev: "Oh, but then you were just being facetious, weren't you?"

Yes, absolutely!

Because the point is, don't target just the terms that have been used in a behavioral community.

But that is what this blog does, and that is why my comments are facetious. The majority of examples given by Michelle in her post came from the DSM. You should also note it was only in 1986 that homosexuality was removed from the DSM as a diagnosis.

If calling someone intellectually disabled makes them feel better than being called Mentally Retarded, then that is fine with me. I'm not defending the term profound or low functioning.

I'm not saying the terms shouldn't change, but just as Mental Retardation was not coined in attempt to be derogatory, neither were the terms high/low functioning.

Both carry the same implications in attempt to define the repetoire and functioning of an individual in comparison to normal development. But that is not how it is portrayed on this blog.

Michelle Dawson said...

Keith ABA wrote:

"But that is what this blog does."

Keith ABA has lost me. I have no idea what he means.

Keith ABA also wrote:

"The majority of examples given by Michelle in her post came from the DSM."

No. The examples I provided came from papers published in scientific journals. The DSM-I used the term "mental deficiency" which was divided into mild, moderate and severe. The DSM-II used the term "mental retardation," divided into borderline, mild, moderate, severe and profound.

Contrast with the language used in Fuller (1949), a landmark paper in the history of behaviour analysis. This paper deserves a blog post all its own.

Keith ABA wrote:

"You should also note it was only in 1986 that homosexuality was removed from the DSM as a diagnosis."

That was 1973. Homosexuality then sexual orientation (up to the present edition) continued to be included or mentioned, but not as a disorder.

Keith ABA wrote:

"But that is not how it is portrayed on this blog."

I'm baffled again. Is Keith ABA criticizing Dr Lovaas' statement? I can't tell.

Estee Klar-Wolfond said...

"it is not necessary to engage in 'a battle' 'on behalf of the truth by debating 'the philosophical presuppositions that may lie within that truth nor the epistemological foundations that may legitimate it." (Foucault, 1972). Foucault maintains that 'to tackle the ideological function of a science in order to reveal and modify it,' one should 'question it as a discursive formation which involves mapping the system by which particular objects are formed and the types of enunciations implicated..."

and

"Power is employed and exercised through a net-like organization. And not only do individuals circulate between its threads; they are always in the position of simultaneously undergoing the exercise of this power. They are not only its inert or consenting target; they are also the elements of its articulation." (Foucault, 1980.)

Correspondingly, Foucaultian work 'makes the effort to look directly at what people do, without taking anything for granted,without presupposing the existence of any goal, material cause or ideology.' (Tamboukou, 1999) The researcher looks to the present as an effect of 'strategies, plays of domination and the struggle of forces', not to the 'tactics of individuals.' (Entire paper by Linda Graham of Queensland University titled: The Incidental 'Other'" A Foucaultian Interrogation of Educational Policy Effects.

In short, it's what we do that counts. Low and high functioning are political terms; socially constructed terms. Whether Laurent Mottron used them in his research does not validate low and high functioning as useful terms, but society's thinking in those terms of functioning and severity. If we use low functioning and severe to take away rights and agency, then we are engaging dominance over the "other." Then, the labels become unfair and do not enhance either social justice, or I think, our collective goals.

VAB said...

The problem with these terms are that they just don't carry much information. It's Bevis and Butthead view of the world in which things rule or suck. If you are going to go to the trouble of commenting on someone's skills, why not just say what they are.

Michelle Dawson said...

I could not understand Foucault to save my life and I'm rather grateful for that. For an antidote, see Flynn (2007).

Mr Doherty's confusion about what science is and does prompted me to post a link to this excellent article . It seems necessary to post it again. Here's a quote:

"Getting the public clear on the scientific rules of engagement might, as an added bonus, help people figure out how to set up other dialogues that are similarly productive, rather than vicious and destructive. Having alternatives to the political model of engagement might be the kind of thing the public could appreciate."

I also recommend this post about what science is.

j.e. said...

Re: Jonathan's "We don't need no stinkin' neurodiversity" on the title of his blog -
http://www.autismgadfly.blogspot.com/

Bev replied : " Oh dear! That wouldn't be the so-called "Royal We" would it?

Bev: you know something about that?

Jonathan's "We..." refered to all the people who agree with his point of view. He represents others.

For instance, Harold L Doherty gives Jonanthan an approving shout-out in his "Autism's gadfly, A Name Well Chosen, A Blog Worth Visiting" here: http://www.autisminnb.blogspot.com/

Michelle Dawson said...

In response to the two totally off-topic posts from J.E., neurodiversity is part of the general idea that disabled people should have human rights.

Because I want all autistic people to have a voice, I'm delighted that Mr Mitchell is free to state publicly that he, as an autistic person, doesn't "need no stinkin' human rights," which is what he is saying.

But Mr Mitchell is also trying to deny the human rights of other disabled people, e.g., by encouraging the public to "just say no" to the human rights of disabled people.

Because it needs repeating, here it is again: neurodiversity is part of the general idea that disabled people should have human rights. It's unclear to me which disabled people's human rights Mr Mitchell is encouraging the public to "just say no" to.

But I'm pretty sure Mr Mitchell is referring to autistics, and possibly also other to neurodevelopmentally disabled people. On the TMoB board, Mr Mitchell has also expressed his disapproval of the Canadian Down Syndrome Society's efforts to establish and defend the human rights of people with DS. Mr Mitchell charaterized the CDSS as "people ... using reaction formation and denial as psychologic defense mechanisms."

So not only does Mr Mitchell want the public to "just say no" to the human rights of autistics other than himself, he may also want this re people with DS.

As I wrote above, Mr Mitchell is free to deny his own human rights, just as any other individual is free to deny his or her own human rights. Setting out to remove the human rights of others, e.g. by encouraging the public to "just say no" to the human rights of disabled people as a group, is another thing.

Joseph said...

For instance, Harold L Doherty gives Jonanthan an approving shout-out in his "Autism's gadfly, A Name Well Chosen, A Blog Worth Visiting" here: http://www.autisminnb.blogspot.com/

That's interesting because Harold often states that "high functioning" autistics should not opine about autism. Those sorts of selective standards are typical of Harold. For example, he often indicates he cares about what scientific authorities say, but on the other hand, is willing to give the benefit of the doubt to completely bogus hypotheses, such as an association between mercury and autism.

Also, Jon happens to be critical of ABA.

Andy said...

Brilliant. I will cite this in my thesis. Thanks as ever.

Ma said...

Read this and chuckled. I have a wonderful, active almost-9 year old who happens to be brilliant and autistic.

Got an early diagnosis and chose to follow him down his own path while helping him translate what might be important from his parents' world.

He's astonishing - working well with Johns Hopkins and Stanford distance courses, spending 3 weeks at lacrosse camp and never asking to come home. Didn't get teased either (he seldom does as he unabashedly sticks up for himself).

So far, we're liking this young gift with the agile mind and the unusual wiring. Can't imagine what he'll teach us next.

Kimberly at Special Needs Business said...

I just came across this blog and I will have to say... very passionate responses!

Its interesting. I held off on "diagnosing" my daughter until the age of 10 dispite the fact I knew she had developmental delays since the age of 1. One main reason why is the fact I did not want her "classified" into any type of category at a young age. Althought it was harder to get her services without a diagnosis.... we still managed.

My point: if my daughter was diagnosed at the age of 2-3... she would be placed in the "low" functioning category given her skillset at the time (non verbal, sensory issues, rocking, delayed milestones, etc) However, since I waited - the landscape has totally changed. The doctors now rate her on the "high functioning" category. We believe at one point she had "low functioning" autism, but because of her intensive treatment she no longer falls into that classification.

So hmmm... I have to ask myself the question. If my daughter recieved a diagnosis of "low" fucntioning, would it even matter. Maybe if I only defined my child by that lable.... BUT to me - my roll as her mom is regardless of whatever diagnosis she is given, my job is to ensure she has the right services to encourage her strenghs dispite her weaknesses. What matters is the therapy - NOT the title.

My personal conclusion: there is alot to learn about autism. I hope parents don't get too wraped up into the "symantics" of high functioning/low functiong. I would agree doctors have to rate it from a medical classification based upon the levels of capiblity at the time, but that is why I believe autistic children need periodic evaluations.

For instance: I know my daughter could "digress" and become more low functioning. Since this is her natural coping mechinism during stress, I have seen that happen. However, she normally maintains a daily life of "high functioning". If she digresses as she matures (more social pressures etc) then perodically assessments maybe needed. But if the doctor gives her a "low" functioning diagnosis - that wouldn't change who my daughter is. All it would tell me was where she is at.

A great support once told me... think of this as "your childs" conditions. As a parent, you know what will work for your child best. For my daughter it was art therapy/animal therapy...which can be used regardless if she was a low functioning/high functioning child.

Kimberly
http://specialneedsbusiness.com