Diagnosis by Committee

Temple Grandin talks about label-locked thinking and how it limits the way we approach ourselves and our loved ones.

http://www.salon.com/2013/05/18/temple_grandin_on_dsm_5_sounds_like_diagnosis_by_committee/




Excerpt:

"Label-locked thinkers want answers.

This kind of thinking can do a lot of damage. For some people, a label can become the thing that defines them. It can easily lead to what I call a handicapped mentality. When a person gets a diagnosis of Asperger’s, for instance, he might start to think, What’s the point? or I’ll never hold down a job. His whole life starts to revolve around what he can’t do instead of what he can do, or at least what he can try to improve.

Label-locked thinking goes the other way, too. You might be comfortable with your diagnosis but worry that it will define you in the eyes of others. What will your boss think? Your coworkers? Your loved ones? Half the employees at Silicon Valley tech companies would be diagnosed with Asperger’s if they allowed themselves to be diagnosed, which they avoid like the proverbial plague. I’ve been to their offices; I’ve seen the work force up close. Many of the hits on my home page come from Silicon Valley and other areas with a high concentration of tech industries. A generation ago, a lot of these people would have been seen simply as gifted. Now that there’s a diagnosis, however, they’ll do anything to avoid being ghettoized.

Label-locked thinking can affect treatment. For instance, I heard a doctor say about a kid with gastrointestinal issues, “Oh, he has autism. That’s the problem” — and then he didn’t treat the GI problem. That’s absurd. Just because gastrointestinal problems are common in people with autism doesn’t mean that the GI problems are untreatable on their own. If you want to help the kid with GI issues, talk about his diet, not his autism."

What is "high-functioning?"

When an autistic person is described as "high-functioning", what does this really mean? It's effectively a measurement of how close to "normal" that person appears on the outside, how indistinguishable from their peers they can manage to appear.

The word does nothing to offer insight into the person being described.

It is certainly not a measure of even how autistic they are, but rather, describes only how well that person can pretend to be like non-autistic people.

Please avoid using high and low functioning labels, as they dehumanise by generalising, and perpetuate negative stereotypes about autistic people, and offer no insight into the person being described. 

Proposed DSM-V Revisions

The time is drawing ever-nearer, when we will have to contend with a new set of diagnostic criteria for what will now be named "Autism Spectrum Disorder". There will be no more Asperger's Syndrome, no more Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), no more Childhood Disintegrative Disorder.


The main reason for the changes is due to advances in research and knowledge since the DSM-IV (psychiatric manual for diagnosing mental disorders) was published in 1994. For a start, there's no strong body of research evidence distinguishing High-functioning Autism from Aspergers. Even Tony Attwood says that the only difference between the two is how they are spelled.

The use of the term Autism Spectrum Disorder isn't new, it's been prevalent for some time now, used as an umbrella term by professionals the world over. Meanwhile, there are many people diagnosed with Asperger's ("Aspies") who feel that removal of their label is tantamount to stealing their identity. My son says that no matter what, he will always be an Aspie. But by the same token, he just as readily identifies with the title Autism because we have used the two terms equally in our household. Asperger's is a form of Autism, that has always been true, so we have used the language accordingly.

There is some serious concern that many people with less severely debilitating forms of autism, who might have been diagnosed under the DSM-IV, will no longer be diagnosable under the DSM-V criteria. This concern is based primarily on one study, and I have read some responses to that study which suggest it doesn't offer enough evidence to prove that point. However it's still a valid thing to be concerned about, especially if people are going to find themselves without supports and medical assistance when they truly need it.

I am still working out my own views on all of this, so I can't express a solid opinion just yet. Just as there was with ADHD, the chatter out there in the world is that Autism is being overly diagnosed at the moment (whether or not I agree with that chatter is also yet to be determined). I'm also tired of hearing about the (in my opinion fictional) "epidemic" (that's a whole other rant). So while I hesitate to state this in black and white, maybe it's possible that some people who wouldn't be diagnosed under the new criteria, shouldn't be diagnosed anyway. Then again, if people with legitimate need are left out in the cold because of poorly written criteria, that's obviously very bad.

Our pediatrician has made it clear that my son would easily still be diagnosed with Autism under the new criteria. But then he started out as profoundly affected and only after many years of sheer bloody-minded effort from many people since he was 12 months old, he then fit the Asperger's criteria, with a few additional quirks/challenges thrown in. So maybe there are other kids who find life a little less challenging than he does, but who still need help, who might not be eligible under the new criteria. That remains to be seen, but I hope that's not the end result.

I do believe the re-labelling is an important step, at least on a psychosocial level. Too long have invisible lines been drawn between different groups in the Autism community, separating children by their level of functioning, comparing and saying some are "worse off" than others. On the surface it might seem that way, but in fact all people with ASDs deserve acknlowedgement and support on their journey. Such comparison does not help anyone. Too long has this division been used as a weapon in debates about what is needed and what should be done for people with Autism. I believe the labelling will provide greater unity within the Autism communities around the world, as parents and carers as well as those with ASDs all realise they are walking the same difficult path, each with their own complicated obstacles to overcome.

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The new diagnostic criteria will be as follows:

Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). 

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning.

http://www.dsm5.org/proposedrevisions/pages/proposedrevision.aspx?rid=94#

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Other interesting articles on this subject:
http://theconversation.edu.au/dsm-v-and-the-changing-fortunes-of-autism-and-related-disorders-5071
http://autismcrisis.blogspot.com.au/2010/02/proposed-new-autism-criteria-dsm-v.html
http://www.modernmedicine.com/modernmedicine/Modern+Medicine+Now/DSM-V-criteria-for-diagnosis-of-autism-criticism-r/ArticleStandard/Article/detail/779115

Understanding Challenging Behaviour Part 2

 ... quoted from the Autism Discussion Page, a very useful resource.


Understanding Challenging Behavior Part 2: Core Deficit Assessment

Understand the core deficits of the disability to interpret the function of behavior!

For most of us, the often extreme reactions we see in children on the spectrum can look bewildering to us. We are taught to look at the observable triggers of the behavior, and the observable effects that the behavior has, in order to understand the “function” that behavior serves. However, what we see on the observable surface is not enough to understand the function the behavior serves. We often are quick to punish, or extinguish, a behavior, before understanding the adaptive function the behavior serves the child.

It is important to understand the core deficits of the disability to understand the true functions the behavior serves (what the behavior is communicating). You have to understand the (1 sensory challenges (sensory defensiveness, overload, arousal issues), (2) cognitive deficits (inflexible, black and white thinking; difficulty shifting gears; limited ability to evaluate consequences; poor empathy, etc.), (3) emotional deficits (poor frustration tolerance, limited emotional regulation, emotional overload, etc.), (4) social difficulties (difficulty reading social cues, reading effects their behavior has on others, etc.) (5) communication issues (difficulty expressing thoughts, feelings, and perspectives) and (6) medical/biological issues (digestive, allergies, weak immune system, etc.) in order to understand the “adaptive function” that drives the behavior. Once we understand the “core deficits” of the disability, the behavior is much easier to understand. In addition, once this function is identified, then we can provide the proactive supports needed to lessen the stressors driving the behavior, and teach more acceptable, alternative behavior to serve the same function.

If your child is having problems at home, or school, make sure those who are designing strategies for changing the behavior, understand your child’s unique vulnerabilities, and core deficits, that will help explain the behavior. Until you understand how the child experiences the world, you will often misinterpret what the behavior is communicating. The two links below will take you to two documents that will help you indentify and understand some of the core deficits (vulnerabilities) that must be understood. The first (Fragile World on the Spectrum) gives a summary of the different areas of vulnerabilities and strategies to support them, and the second document, “core deficit assessment” scale, you can use to help identify the your child’s specific vulnerabilities. If you understand these vulnerabilities, then you can accurately interpret why certain events result in such extreme reactions from the child. Understand first, before trying to change behavior. This is a simple check list that is meant to identify areas of vulnerability. It is not an all inclusive list, but a summary of common deficits that will lead you to look more closely into each areas of concern.


Fragile World on the Spectrum
https://docs.google.com/open?id=1mBVbanii-njBz3NsAEJqNK8haRiarACSX3vaiRcqp392vMeDDB4EWBwMCpYH

Core Deficits Assessment Scale
https://docs.google.com/open?id=0B1DaJtXzRn91YmRlYjU2ZmUtY2Q2Yi00ZWNmLWI5MzctOThmZTk3ZjMxZDdj

Understanding Challenging Behaviour

 ... quoted from the Autism Discussion Page, a very useful resource.


Understanding Challenging Behavior Part 1: Functional Behavior Assessment

(This is the same article as the one posted earlier in the “discipline” series, except it has a comprehensive “functional assessment form” for doing assessments. This is the professional evaluation tool I use when assessing challenging behavior)

This series will go more in depth in how to incorporate a functional behavior assessment (analysis of behavior) with a core deficit assessment (analysis of the autism vulnerabilities) to get a more thorough understanding of your child’s behavior challenges. The documents that are attached are meant for professional evaluations (forms that I use), but are helpful for everyone. This first article in the series will describe the process of doing a “functional behavior assessment”.

All behavior serves a function (purpose) for the person. Behavior occurs for a reason(s). It serves a function for the child. The child may be acting out to escape or avoid something uncomfortable for him, may be doing it for the attention or reaction he gets from others, may be for stimulation when bored, or to gain something that he desires. The child may be screaming because he has no other way of communicating that he is hungry, frustrated, or in pain. He may be screaming because the demands placed on him are greater than his current skills in dealing with them. He may be screaming because he is overwhelmed by the sensory chaos of the load noises, bright lights, and strong smells in the grocery store. He may be screaming because his sister just took his favorite toy from him, or screaming because he just stepped on something sharp. Consequentially, the same behavior can occur for a variety of reasons (under a variety of conditions) and several behaviors (screaming, biting self, hitting others) can occur for the same reason (escape or avoid something undesirable).

Identifying the function(s) the behavior serves give us a good understanding of why it is occurring, the purpose that it serves for the child, what is maintaining the behavior, and some ideas of how to go about supporting the child and reducing the problem behavior. It can be troublesome to try and change a behavior before understanding the purpose that it serves the child, and the conditions under which it occurs. Reducing the problem behavior may be as simple as modifying some of the conditions causing the behavior (reduce demands, provide added support, etc.) or changing the way we react to the behavior (support rather than demand, minimize our emotional reactions, redirect, etc.). Often times we do not have to change the child at all, but modify the conditions (often our own behavior) surrounding the behavior. In other cases, we may need to teach alternative behaviors to replace the ones we wish to decrease.

When doing a functional assessment, we try to define the conditions occurring just prior to the behavior, that may be influencing (triggering) its occurrence. These conditions are usually called “antecedents” to the behavior. They set the stage for the negative behavior to occur. By tracking (documenting) when, where, what is occurring, as well as with whom, at the time the behavior is occurring, we are can identify common conditions (antecedents) that elicit the behavior. Maybe it may occur when certain demands are placed on the child, under certain sensory stimulation (bright sunlight), when left alone with nothing to do, etc. By noting these conditions each time the behavior occurs we can isolate out certain common patterns (conditions) that produce the undesirable behavior. Identifying what conditions the behavior occurs can tell us a lot about what function the behavior serves for the child (escape demands, attention, getting something, etc.) Often we can reduce the frequency of the behavior simply by eliminating or modifying the conditions (antecedents) that elicit the behavior. If we can change the conditions triggering the behavior (reduce the demands, provide more frequent attention, give frequent breaks, etc.) we reduce the need for the child to engage in the behavior. Even if we cannot eliminate or modify the conditions, we can provided added support (greater assistance) or accommodations to help the child adapt to the conditions (e.g. sunglasses to minimize bright lights). Changing the antecedent conditions triggering the behavior is often the best, and easiest, way to reduce the unwanted behavior. Change the conditions before trying to discipline the child.

We may also look at under what conditions does the behavior “not occur”. If the behavior does not occur when added support is given, then we may want to increase our support to minimize frustration. If the behavior occurs when the activity occurs in the morning, but not when the activity is in the afternoon, then we may change the time of the activity until the afternoon. If we can identify times and conditions when the behavior is less likely to occur, then we may want to increase those conditions. So, by identifying when, where, and under what conditions the behavior does occur, and when it reliably doesn’t occur, we can make major modification in these conditions.

In addition to identifying the conditions triggering the behavior (antecedents), we also want to identify the immediate effects (reactions) the behavior has immediately following its occurrence. Again we want to note what occurs (especially how people react, and what effects the behavior has for the child) immediately following the behavior (e.g. withdraw demands, reactions of others, getting something he wants, escaping situation, etc.). These are the gains, or payoffs. that the child receives from engaging in the behavior. These effects are often what are reinforcing the behavior, and increasing the likelihood that it will occur again under similar conditions. By identifying these effects we can often modify the effects so that the behavior does not provide the same payoffs for the child, thus decreasing the likelihood of occurring again under similar conditions. We may want to minimize our reaction to the behavior, if our attention seems to reinforce it, or we may want to make sure the child doesn’t get to what he wants by throwing a tantrum, or get out of doing things by acting out. Or, we may want to teach the child better, more adaptive ways, of obtaining the same effects (saying “stop” or “help”, rather than hitting, when wanting to escape a difficult demand).

As you can see, by changing the conditions that elicit the behavior (antecedents) and the effects (consequences) that occur immediately following the behavior, we can significantly modify the likelihood of the negative behavior occurring again. Most recently, the emphasis has been on identifying the conditions that trigger the behavior and building in added supports to either eliminate or modify the antecedent conditions, or providing accommodations and/or added assistance to minimize their negative effects. This way we are reducing the stressful conditions that trigger the child’s undesirable behavior.

In addition to changing the conditions, once we identify the function (purpose) that the behavior serves, we can also begin to teach other, more acceptable, behavior that can meet the same result (purpose, function). If the child chews on his shirt for stimulation to stay aroused, we might substitute chewing gum to take its place. If the child yells in class to get the teacher’s attention, he might be taught to raise his hand instead.

The following documents will provide you with a comprehensive functional behavior assessment form, that I use to evaluate a challenging behavior, a flow chart summarizing the components of a functional behavior assessment, and a power point presentation on doing a functional behavior assessment.

This link will take you to a comprehensive “Functional Behavior Assessment Form”
https://docs.google.com/open?id=0B1DaJtXzRn91OTdyZDVFTzNpT0k

Also, this link will take you to a nice flow chart for Functional Behavior Assessments:
https://docs.google.com/open?id=0B1DaJtXzRn91WnJDOGhDWkFOTDQ

Power point presentation on “Reducing Problem Behavior
https://docs.google.com/open?id=0B1DaJtXzRn91YURwV1NCdzFRbk9QSFktbmt4cXd5Zw