About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Tuesday, May 26, 2009

The Mislabeled Child: On Autism Spectrum Disorders (ASD)

This is second installment of my discussion of The Mislabeled Child. Here is a link to the first installment. This is a long one, so I've divided it into parts.

I Background

As I blogged, the authors write through a "neurolearning" lens. Of labeling, they write:
Labels matter becasue they can cause us to take an overly sterile, detached, and clinical view of a child's learning challenges and forget that these challenges occur in the context of a child's unique and complex life. They can make us overlook the important role that a child's unique temperament plays in dealing with learning challenges, and our need to help children develop character traits like optimism and resilience. [Emphasis added.]
The problem is: science is sterile and detached, by definition. And arguably, those very qualities are what provide a diagnosis with integrity and rid it of bias. Education and learning are, at best, social sciences and at worst, entirely unscientific. Autism, by contrast, is a biological condition - a life science, not a social science.

II Mislabeled

Applying the neurolearning lens, the authors conclude that autism is a commonly misapplied label. These mislabeled children, they argue, often have other conditions that are superficially similar to autism. They write:
...[c]hildren with these other conditions don't show the severe deficits in emotional empathy, "mirroring," and social affiliation (or sense of bonding with others) characteristic of autistic disorders.
They also report that children with autism present with different brain scans when compared to children with "other conditions." From a learning perspective, the group the authors label as autistic are generally impaired with respect to higher order thinking.

Noticeably absent from the differential diagnosis: engagement, the lack of which is commonly regarded as a defining quality of autism. They concede that these mislabeled children often have difficulty with social interactions and are superficially similar to autistic childen.

In essence, the authors are drawing a line where it doesn't otherwise exist from the perspective of empirical observation of behaviors (which they pejoratively describe as clinical and sterile). They don't expressly argue that practitioners are misapplying the DSM-IV diagnostic criteria. Rather it appears that they are arguing that, to get at the essence of autism, we need to go behind the behaviors. Pop open the metaphorical hood and poke around.

III The Good

What works best about the neurolearning paradigm is the prescription for treatment and particularly, how to teach or apply learning strategies to autistic children. This is a pet issue of mine, right? I started blogging in part because Brad's doctor was pushing ABA and I've faithfully blogged against ABA-pushing ever since. The Mislabeled Child articulates a great, easy-to-understand prescription for treatment for autistic children and nonautistic children alike. What follows is an outline of the relevant section on autism:
General Principles for Helping Children with Autistic Disorders
  • Reward and Motivation
  • Using Their Best Learning Strengths and Styles
  • Simplifying Information Input and Pattern Processing
Helping Children with Autistic Social Impairments
  • Helping Autistic Children to Develop Empathy
  • Helping Autistic Children Improve Their Social Interactions
Helping Children with Autistic Communication Impairments
  • Improving Verbal Comprehension
  • Improving Nonverbal Comprehension
  • Improving Verbal Expression
  • Improving Nonverbal Expression
Helping Autistic Children with Attention and Self-Regulation
  • Helping Autistic Children Improve Attention
  • Helping Autistic Children Improve Emotional Self-Regulation
Their roadmap for treatment is helpful, and I would encourage you to buy the book if you are interested in learning more.

The authors don't directly prescribe ABA as a treatment, but rather intimate that some of the underlying principles (reward and motivation) have merit. They write:
...[a]utistic children typically have a diminished desire to imitate others or to please and earn praise from others. In this way, they differ from most children, who quite naturally want to imitate and please parents and other adult authority figures - like teachers. Usually we take these desires to imitate and please others for granted in designing our educational and therapeutic systems. However, when a child has little intrinsic motivation to imitate or please, we must find a way to motivate her using things she finds extrinsically rewarding. [Emphasis added.]
The authors don't go on to draw the negative implication, so I will: if a child has the desire to imitate or please, it doesn't make sense to use an intensive program of therapy like ABA which is based on a system of extrinsic rewards. Common sense, right?

Not so much. As I blogged a few weeks ago, Deborah Fein et al published a study in which a group of children who present with "verbal and motor imitation" skills were said to recover from autism, and the study implies (but does not prove) that intensive ABA therapy caused this positive outcome. So there's a group of respected researchers who have taken common sense and turned it on its head: let's take the children who are imitating (without extrinsic rewards) and subject them to an intensive system of therapy (40 hours per week, recommended!) based on extrinsic rewards.

IV The Shortcoming

While I think the neurolearning paradigm is compelling, it does have a shortcoming: it's ahead of its time, for two reasons:
  1. The neurological indications (ie abnormal brain scan) are not dispositive as biological markers for autism at this juncture, from a scientific perspective. There are clusters of patterns of statistical significance, but not enough to define autism in whole, because autism itself is such a heterogenous condition. For example, from an etiological perspective, there may be five different autisms, three of which have observable neurological indications (ie abnormal brain scan) and two of which do not. In truth I don't know how many etiologically distinct "autisms" there are; no one does. Today. Maybe tomorrow, but not today. And even if we fast forward and hypothesize that biological markers will be discovered, who's to say that they will take on the form of neurological indications? Perhaps, one day the "litmus test" for autism will be a genetic test, not a brain scan.

  2. The correlary to autism as a mislabel is that these children often have an "other condition" that mimics autism. In other words, it's "you don't have this (autism), you have THAT." However, at least one of the THATs - sensory processing disorder - isn't recognized in the DSM-IV. This means there is no uniform way of diagnosing it. It also means that the label won't be respected or understood by the public school systems. In this blogger's opinion, a label is useless and perhaps harmful if it isn't uniformly applied or understood. Which, ironically, is the argument commonly used against the liberal application of the autism label. But the same argument can be made, more forcefully, with respect to SPD. (To be clear, I'm not arguing that SPD is a bad diagnosis or doesn't exist; I'm merely arguing that, today, it's poorly understood and not respected.)
More on sensory processing disorder and where I think Brad fits into it all in my next installment.


Queenbuv3 said...

When my son was little he did not imitate or enjoy being praised when he did something right. He has developed a desire to imitate and get praise as he has matured. He has not been in an ABA program for about 5 years. He has made the most progress without ABA. He is still considered severely Autistic but he has developed these skills or desires over time. He has also been able to generalize skills in different environments which do not usually come easy to a person with Autism. Have any of you had this experience with your children with Autism?

Laura said...

Hi. Nice to hear from a vet. Brad has always been a little pleaser, consistently seeking out praise. As for generalizing - eh. sometimes yes, sometimes no. We take it day by day.

Queenbuv3 said...

A vet? Veteran or veterinarian? I always thought ABA treated people like animals considering their techniques are based on animal behavior modification. Do a trick get a treat. My son still feels like he needs to do something or get permission to eat snacks that are accessible to him without any limitations.

Shari said...

My guy, 2 yrs. 10 mo., is doing ABA now. The "work" sessions are only about 15 min. long in a one hour period. I'm sure every therapist is different, but what ours does is give a reinforcer (candy) once or twice and then very verbal praise the rest of the time. It is teaching him to seek out praise (a people connection) as a reinforcer rather than candy. It really is working for him, but my little guy is not a people pleaser so this is a biggie.

A whole book could be written on what comes first, autism or sensory issues (The Boy Who Loved Windows) so I will only comment on one aspect that my guy deals with: lack of empathy. Is it that he doesn't care, or that he doesn't notice? When a little girl got hurt that he was playing with, he was all over it. Stopping and hugging and saying "oh no" over and over again. (one of his only phrases) But we can walk by a crying child at Wal-Mart and he not even see her. Maybe there's too many other things to distract him in that environment? Maybe it's not lack of empathy, but not enough ability to screen things out? I know that empathy can go into Theory of Mind too, but I'm trying to keep it simple here.

BTW, the above book used Floortime to help the child, not ABA.

I will say that my guy has a large head. It is still visibly larger than his brother's who is a year older. I'm leaning toward thinking that his has something to do with brain sturcture. But the therapy would still be the same.

Laura said...

Queenbuv3 - oh I meant veteran, as in veteran autism mama. I bow to you. :-)

Shari, I don't think you can measure empathy when they're this young and their language and ability to express themselves is limited. I put a question mark by that one for Brad. All toddlers are, by nature, me-centric. As for treatment, sounds like your little one is on a good path.

Jann said...

To me, the most illuminating part of The Mislabeled Child is the detail of why so many evaluators label children autistic when they really have language, sensory, or visual or auditory processing issues, or even giftedness. Particularly schools go for the easy surface stuff without digging a bit deeper.

In my book, it's the lack of affiliative drive, lack of mirroring ability, lack of empathy that are the true definers of autism.

But as the Eides, Stanley Greenspan, and so many other long- term diagnosticians note, these core issues get skipped over for secondary and tertiary characteristics.

It's only common sense that if you have a serious language disorder, your social skills are going to be reduced. Duh!!!!!

I watched my son try to strike up a conversation at carnival with some kids who go to his school. They laughed at him and rolled their eyes. How many times does a child put themselves out there before he starts to withdraw, or stop initiating after that kind of rejection?

Interestingly, my son's best pals are newly adopted kids from Central America. They play for hours and hours together -- and because this kindergartner and 1st grader are just learning English, they are truly my son's "peers."

Anonymous said...

As an autistic adult, I can say without reservation that I do not lack empathy or a desire to bond with others. I've been autistic all my life (50 years), and I have more empathy than most people and a very deep need to belong. Unfortunately, the world does not always see me that way.

In my experience of autism, it's too much empathy that's the problem, not too little. I walk into a room and I can feel everything that's going on with all the people in that room. Everything comes in at me in a very intense way. Visual, auditory, tactile, vestibular, emotional--if it's there, I feel it.

It can appear that autistic people don't have empathy and don't wish to bond, but that's because we're neurologically on hyper-drive a great deal of the time. Everything comes in at once, and at a very high volume. We desire a sense of belonging just as others do, but we have a range of aversive reactions that exist to give ourselves some relief from the intensity of our perceptions.

I'm not sure it's possible to really understand autism without being inside it, but it's important to not make assumptions as to why a child doesn't show empathy consistently or attempt to bond with others. There is so much research out there by non-autistic people, and so little of it seems to describe what our internal experience actually is.

Nyx said...

Sorry to bring in yet another book:), but I have found a book that has nothing to with autism called "Darwinian Happiness" to be incredibly thought-provoking. The author talks a lot about how our biology drives (is!) our behavior and creates our feelings and personality, and in particular how everything we do and think and feel is something going on in the brain. The fact is that we ARE our nervous system; everyone's behavior, autistic or not, is simply a reflection of what is going on in there. Psychology and linguistics may provide very useful models -- maybe the only currently useful models -- for trying to understand and predict human behavior and development, but ultimately they are conceptual constructs that do not actually describe what is physically going on. I find the Eide's book helpful because it is so far the only thing I have found that is attempts in plain english that I can follo to match up what is going on in the brain, as best we know, to what is going on with various behaviors. I was very struck by their point that the appropriate therapy should vary according to whether the problem is with sensory input, sensory processing, or higher-order, long-distance connections among different centers in the brain. To be honest, I still didn't understand enough from reading the book to figure out clearly how to do that myself, but I think it is only common sense that how you interact with a child, and whether or not your interactions are going to help that child progress, depend entirely on what the nature is of the neurological issue. It may be that we just will never know this, but it does seem as though in theory, with proper observations someone ought to be able to distinguish among these different sorts of problems. I for my part am determined to try to figure out as best as is currently possible what is going on under the hood.

Kris said...

I just wanted to to tell you I love your blog. I find it intelligent and refreshing. My son is 5 and was dignosed with high functioning autism last August. When we went for our 2nd opinion, we were told it was not ASD, but rather ADHD and SPD. SPD was confirmed by an OT. Of course then we had to go for a 3rd opinion so we went to Kennedy Krieger where they confirmed ADHD with sensory processing and language difficulties, but not ASD. My son is a poster boy for what the Eides are talking about with ASD being overdiagnosed - b/c he does meet most of the criteria. However, he does not have the deficits they claim are essential for a dx of ASD. The other book that helped clarify this for me is "Engaging Autism" by Greenspan.
Clearly, my son is at the edge of the spectrum (and by many definitions he is on it) but what I have found is that by treating the symptoms, the treatment is pretty much the same for him whether the dx is ADHD/SPD/language disorder or HFA. He has so many of the same symptoms.
I will continue to follow your blog!

Laura said...

Rachel, I hear you. And that's part of the problem with the idea of going behind the behaviors. "Autistic children don't have affiliative drive." Oh really? How is that determined?

Jann, hold that thought. Nyx, thanks for the rec. That DOES sound interesting and up my alley.

Kris *blushes* thanks, and welcome. Sounds like we're in the same boat. I read and enjoyed Engaging Autism, although some of it rubbed me the wrong way.