Most of What We Call Autism-Behaviors Really Are Not Unique to Autism

An Educational Aside

In my working with teachers and school psychologists, I have noticed there is a trend toward attributing a wide array of maladaptive and challenging behaviors to autism.  Poor social skills are called “autistic traits.” Whenever there is a profound sensory need autism is assumed, even though sensory processing issues are present in a wide array of developmental disorders. Poor communication is regarded as autistic. Idiosyncratic toy usage…  Stimming…  And so on and so on.

These assertions are just wrong and they kind of get on my nerves because I regularly have to say, “he is not autistic” and “that is not autism.” But then I realize most people do not know any better, and they think labeling a behavior with a disorder is helpful somehow.

Illustrative example: 22q11.2 deletion syndrome

My example from research is from Tony Simon’s lab. He found that kids with the 22q11.2 deletion syndrome are often given an autism diagnosis. He and the team of pediatricians in the 22q clinic he works with were annoyed by this trend. They saw 22q and concomitant anxiety disorders, not autism. So they studied whether 22q is actually associated with autism.

The study is: Social Impairments in Chromosome 22q11.2 Deletion Syndrome (22q11.2DS): Autism Spectrum Disorder or a Different Endophenotype?

What they did was to take all the children with 22q11.2 DS that came through their clinic and used two gold-standard autism questionnaires. The ADOS-II and the SCQ. The UC Davis MIND institute had decided previously that their autism diagnostics were based on agreement across these two measures. This reduces false positive diagnoses (diagnosis of autism in a child that is not autistic), but only slightly increases false negatives (an autistic child does not qualify for an autism diagnosis) when compared with the parent responses to the ADI-R. The effect of this choice was that the researchers at the MIND Institute were confident that when a child was labeled autistic, they were.

When the kids with 22q were assessed in the clinic, they were found resoundingly not autistic. Not even close. Zero kids with 22q11.2DS met the criteria for an autism diagnosis using the combined ADOS-II and SCQ.

What the researchers found was that 22q has a unique pattern of abnormal social skills and other functional deficits that could be interpreted as autism if the clinician did not conscientiously take 22q into account. Basically, despite overlapping behaviors, 22q and autism are unique. The paper suggests clinicians refrain from labeling 22q as autism because the help and interventions available for autism are not always appropriate for kids with 22q.

Their conclusion paragraph (emphasis mine):

In conclusion, based on best practice assessment, ASD is not as common as previously reported in 22q11.2DS and highlights the importance of integrating multiple sources of information when considering an ASD diagnosis. Elevated scores on single measures are not sufficient for a clinical diagnosis of ASD, and this study is the first to use the ADOS in addition to parent report, in the evaluation of ASD symptoms in 22q11.2DS. All children with 22q11.2DS had strengths in social interaction and weaknesses in imagination and insight on the ADOS. Children with elevated ADOS scores tended to have relative weaknesses in communication. Further investigation is warranted to explain how the social impairments, difficulty with communication, and repetitive behaviors in children with 22q11.2DS are similar and different from ASD. Comorbid conditions such as anxiety and cognitive impairments likely contribute to false elevations on individual ASD measures, and future research should proceed with both components to ascertain accurate levels of ASD in 22q11.DS populations. This would directly impact treatment recommendations and patient care procedures

My two cents about labeling rather than describing behaviors

One concept I learned from Tony Simon when I was collaborating with him as a graduate student and postdoc was the idea of a neurocognitive endophenotype. That is just a fancy word for patterns of deficits unique to populations with genetic disorders. This has helped me to see that no single or small subset of behaviors are sufficient to accurately diagnose any disorder. We need to look at the whole child and all of their behaviors. Only then can we have confidence in our diagnostics. Some links to my writings on this are here, here, and here.

I often forget that most clinicians and all educators are not trained to think this way. So they do not see the error of their ways in armchair diagnosing based on 2-3 behaviors. As stated above, they believe they are being helpful by attributing behavior to a diagnosis.


My contribution to this discussion

Instead of ranting about behaviors and dangers of kids being mislabeled, I am going to educate. I feel like the best contribution I can make is to provide knowledge that can be acted upon.

I am going to list a bunch of “autism behaviors” I hear a lot on one side of a table. I went on the internet and searched “autism behaviors” and cut/pasted the items from the list into the table as well. On the other side of the table, I will list other disorders that show the same behaviors.

I hope that you will be able to see that these are not very useful behavioral criteria for a differential diagnosis, but they are the traits most commonly labeled as behaviors caused by autism.

For this table, I will leave it to the reader to surmise examples of these behaviors in neurotypical folks as well. I will volunteer one: one can claim a version of echolalia is that one friend that communicates exclusively using Big Lebowski quotes, regardless of the applicability to the present conversation or evident annoyance of people around them.

Another example is pen twiddling or hair twirling during meetings. We all do it, but these are clearly defined as stimming behaviors when done by an autistic.


For this table, I am going to use the following neurodevelopmental and psychological disorders as examples. There are many others I can use, but I chose these. I have experience with all of these disorders and can say confidently based on clinical research and experience that kids with these disorders are not autistic.

FXS = Fragile X Syndrome; DS = Down Syndrome; CDD = Childhood Disintegrative Disorder; ID = Intellectual Disability; WS = William’s Syndrome; TS = Tourette’s Syndrome; 22q = 22q11.2 deletion syndrome (also called DiGeorge or velocardiofacial Syndrome); OCD = Obsessive Compulsive Disorder; ADHD = Attention Deficit Hyperactivity Disorder; KF = XXY, XXYY, or other Kleinfelter’s/Sex Chromosome Aneuploidy karyotypes; AS = Angelman’s Syndrome.

 

BEHAVIOR DEVELOPMENTAL DISORDERS
Communication Deficits
No Speech FXS, DS, CDD, ID, AS, KF
Severe Language Delay FXS, DS, CDD, ID, WS, 22Q, AS, KF
Abnormal Speech Patterns FXS, DS, CDD, ID, WS, TS, 22Q, ADHD, KF, AS
Echolalia FXS, ID, TS, KF
Do not Initiate or Engage in Reciprocal Conversation FXS, DS, CDD, ID, 22Q, ADHD, KF, AS
Do Not Respond to Name FXS, DS, CDD, ID, TS
Do Not Point of Gesture to Items of Interest FXS, DS, CDD, ID, AS
Unrelated Answers to Conversational Questions FXS, CDD, ID, TS, 22Q, OCD, ADHD, KF
Pronoun Reversal FXS, ID, KD, AS
Avoid Eye Contact FXS, DS, CDD, ID, 22Q, OCD, ADHD, AS
Do Not Imitate FXS, CDD, ID, TS, AS, KF
 Restrictive Interests
Insist on Sameness FXS, DS, ID, WS, TS, 22Q, OCD, ADHD. AS
Insist on Routine FXS, DS, ID, WS, TS, 22Q, OCD, ADHD, AS
Obsessive Interests FXS, DS, ID, WS, TS, 22Q, OCD, ADHD, KF, AS
Restricted Interests FXS, DS, ID, WS, TS, 22Q, OCD, KF
Stereotypical Play with Toys FXS, DS, ID, WS, TS, 22Q, OCD, ADHD
 Repetitive Behaviors
Spin Objects FXS, ID, TS, AS
Flap Hands, Rock Body, Spin FXS, DS, ID, WS, TS, AS
Line Up Objects FXS, DS, ID, 22Q, OCD, KF
 Social Skills Impairments
Poor Imaginative/Pretend Play FXS, DS, ID, OCD, ADHD, KF, AS
Social Skills Impairments FXS, DS, CDD, ID, WS, TS, 22Q, OCD, ADHD, KF, AS
Poor Theory of Mind FXS, DS, CDD, ID, TS, 22Q, OCD, ADHD, KF, AS
Heightened or Elevated/Reduced Fear/Danger Awareness FXS, DS, CDD, ID, WS, TS, 22Q, OCD, ADHD, KF, AS
Unusual Interests/Behaviors FXS, DS, CDD, ID, WS, TS, 22Q, OCD, ADHD, KF, AS
Desire for Isolation/Alone FXS, ID, OCD, KF
 Sensory Dysfunction
Over or Under Sensitivity to Senses FXS, DS, CDD, ID, WS, TS, 22Q, OCD, ADHD, KF, AS
Resistant to Physical Contact FXS, DS, ID, KF
Self-Injury FXS, DS, CDD, ID, WS, TS, OCD, ADHD, KF, AS
Rocking FXS, DS, CDD, ID, TS, OCD, AS
Executive Function Deficits
Unusual Mood or  Reactions to Stimuli FXS, CDD, ID, WS, TS, 22Q, OCD, ADHD, KF, AS
Aggression FXS, CDD, ID, TS, OCD, ADHD, KF
Hyper or Hypo activity FXS, DS, ID, TS, OCD, ADHD, KF, AS
Impulsivity FXS, DS, CDD, ID, TS, 22Q, OCD, ADHD, KF, AS
Low Attention Span FXS, DS, ID, TS, OCD, ADHD, KF, AS
Impaired Social Attention FXS, DS, CDD, ID, TS, 22Q, OCD, ADHD, KF, AS
Inconsistent Sleep Habits FXS, DS, CDD, ID, WS, TS, 22Q, ADHD, KF
Meltdowns FXS, DS, CDD, ID, WS, TS, 22Q, OCD, ADHD, KF, AS
Nonspecific Phobias FXS, CDD ID, OCD, KF

I sincerely hope we can all agree not to call these “autistic” behaviors anymore. They are by no means unique to autism. 

Implications / Conclusion

I think we need to all just take a step back when working with kids and be extremely careful with labels – especially medical/diagnostic labels. It is far too easy to make an uninformed diagnosis without access to the full medical and family history. And…most of us are unqualified regardless.

Sometimes I feel like we are part of the Monty Python Psychiatrist Milkman sketch, making hasty diagnoses without data.

The solution is simple.

We do not give behaviors labels. We describe the behavior.

We stop attributing certain behaviors to a given disorder. We just describe the behavior carefully and develop interventions without consideration to any particular underlying disorder unless diagnosed by a neuropsychologist and addressed in the student’s educational records.

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Moving Beyond ABA: How to do a Functional Analysis…

#Ooh Ooh Ooh! They Finally Did It!

“In all my years of doing Functional Analysis and treating problem behavior, I have never once, not once, been thanked by a parent for effecting a long-lasting, socially relevant change. None of them have been able to tell me I long-term changed their children’s lives for the better” – Greg Hanley, BCBA-D, Ph.D.

I recently went to a conference about critical issues impacting children and adolescents. I was hopefully optimistic that because the conference was in Utah there would not be too strong a focus on Applied Behavioral Analysis (ABA) as a primary treatment measure for autism.

Alas, I was slightly disappointed when I saw the presenter information and noticed Greg Hanley, Ph.D., BCBA-D was the keynote speaker and teaching all the sessions I was interested in. Anyone following this blog knows I do not put much stock in ABA as a science, which means I have a particular disdain for a rather large proportion of the methods used in ABA and have not shied away from being vocal about it. However, in speaking with my colleagues in the district office that are working toward their BCBA, I found out Dr. Hanley has a “unique and somewhat controversial approach” to functional analyses and the treatment of problematic and dangerous behaviors in autism, and that they were interested to see the “other side” of the debate among BCBA regarding treatment methods.

As a scientist and teacher, I do try to keep an open mind and I try very hard to give everyone the benefit of the doubt, so I took a deep breath, left my prejudice at the door (mostly), and focused on the science of what was being presented. All that being said, I am ecstatic I attended the conference as well as the fact I attended all of Dr. Hanley’s presentations. I enjoyed the presentations immensely and I left hopeful that the methods being used in ABA-based therapy are starting to evolve and treatments are becoming more humane – or at least some precedent is being laid down to justify such a movement.

I will refer the reader to the following links to get information about Dr. Hanley’s works I am speaking about. The first is his website outlining his methods. Under the presentations tab if you look at November 2-5, 2016 there are the powerpoints and handouts from the conference I attended. Relevant papers can be downloaded Here and Here (please contact me if you cannot get these or any articles I link to in this post, I have them and am very happy to share the science).


What is a “standard” Functional Analysis?

Before I dive further in, I do not mean to infer that all functional analyses are standardized tests. They aren’t. I use the term “standard” functional analysis in the same way Dr. Hanley does in his manuscripts. This means any functional analysis that isolates attention, escape, or tangibles as motivators will be referred as a “standard” functional analysis.

Rather than try to give an explanation of a functional analysis, I will give a pseudo-textbook definition and then explain quickly what it means. I leave deeper conversations regarding functional analyses, their validity, and methodology to others.

From Wikipedia:

A functional analysis is the most direct form of functional behavior assessment, in which specific antecedents and consequences are systematically manipulated to test their separate effects on the behavior of interest. Each manipulation of the antecedent and consequence in a particular situation is referred to a condition. In a functional analysis, conditions are typically alternated between quite rapidly independent of responding to test the different functions of behavior. When data paths are elevated above the control condition (described below) it can be said that there is a functional relation between that condition and the behavior of interest. Below, common examples of experimental conditions are described. A standard functional analysis normally has four conditions (three test conditions and one control):

Attention

In this condition, the experimenter gives the individual moderately preferred items and instructs them to go play. After that initial instruction, the experimenter pretends to act busy and ignores all bids for attention from the individual. If the individual engages in the behavior of interest, the experimenter provides the individual with attention (commonly in the form of a reprimand). Behaviors that occur more frequently in this condition can be said to be attention maintained.

Escape/Avoid

In this condition, the experimenter instructs the individual that it is time to work. After the initial instruction, the experimenter delivers a series of demands that the individual is typically required to complete (e.g. math problems, cleaning up, etc.). If the individual engages in the behavior of interest, the demand is removed and the child is allowed to take a break. Behaviors that occur more frequently in this condition can be said to be escape maintained.

Alone

Normally referred to as tangible condition. In this condition, the child is left alone with a variety of items to engage with. If the child engages in the behavior of interest, no programmed consequences are delivered. Behaviors that occur more frequently in this condition can be said to be automatically maintained.

Control (play)

In this condition, the child is allowed to engage with a variety of items during the session. No demands are placed on the child throughout the duration of the session. The experimenter provides attention to the individual throughout the session on any behavior that is not the target behavior. If the target behavior occurs, the experimenter removes attention until the behavior has subsided. This session is meant to act as a control condition, meaning that the environment is enriched for the purpose of the behavior not occurring. Said another way, by meeting environmental needs for all possible functions, the individual is not likely to engage in the behavior of interest. This condition is used as a comparison to the other conditions. Any condition that is elevated to a large degree form the control condition, shows a higher degree experimental control indicating the functional relationship between the specific environmental conditions and the behavior of interest.

In essence, a functional analysis is an experiment. The researcher, teacher, or behavioral analyst forms a hypothesis regarding the function of the behavior – or why the child engages in a certain behavior. They then place the child in a controlled environment and test their assumptions by repeatedly offering the child challenges by removing what they hypothesize the child wants and recording the responses. To preserve experimental replicability, the tangibles used in a standard analysis are held relatively constant across functional analyses, as are the escape and attention contingencies (where to escape and/or scripted attention).

The standard functional analysis can take hundreds of trials and takes a significant amount of time. If everything goes as predicted, the child will respond with a behavior when the experimenter removes the hypothesized contingency (attention, escape, or tangible), whereas removing the other contingencies will not result in similar flare-ups of behaviors. The standard functional analysis also interspersed free-play conditions they consider a control or no task condition. This differential effect is called “differentiation” and is the hallmark result of a behavioral analysis.

What is this new thing I am talking about (IISCA)?

What Dr. Hanley proposed in 2014 was a new way to perform a functional analysis. The quote I started this post with was what Dr. Hanley said as his motivation for changing how he does his functional analyses. He spent decades performing standard functional analyses and designing behavioral treatments based on the results of those analyses.

In his presentations, Dr. Hanley belabored a point I agree with entirely. He suggested it as a motivation for developing the IISCA and relying on open-ended rather than standardized interviews.

[F]rom a clinician perspective, it does not matter whether or not we can characterize the function of a behavior; just so long as we can identify the topography of the behavior and use our identified synthesized contingencies to turn the behavior on and off. If we can do that, then we can help the child or young adult. We get too bound up as BCBA and ABA therapists on characterizing the behavior that we forget that our goal is to help the child overcome problematic or dangerous behaviors. We get too bound up in positive and negative reinforcements and other definitions that we lose sight of our mission.

IISCA stands for Interview-Informed Synthesized Contingency Analysis. They chose to go with the clumsy acronym IISCA because it captures two procedural differences between this method and the traditional, “standard” functional analyses. The first is that the specific contingencies (and combinations thereof) assessed and materials used in the sessions are derived from the interviews, thus the analysis is interview informed rather than experimenter driven.

The first part of the IISCA is the open-ended interview (you can download the actual template here). This is important for two reasons: First, checklists like those commonly used by BCBA to interview parents tend to limit responses to multiple choices and thus can actually guide responses rather than allow parents or caretakers to report their experiences. And B, open-ended questionnaires take a lot less time to perform. Often, the checklist questionnaires take 60-90 minutes to perform, whereas the open-ended interviews take 30 minutes. Sometimes, parents even take the forms home, talk to their family, and return it at their leisure.

The second part that I will emphasize for the IISCA, and why I like it as a method, is that it accepts that reality is complicated. What I mean is that I have never met a child misbehaving for something as simple as “attention” or “escape”. I have never seen a student try to get out of doing work and being contented with fleeing from work to a corner of the room to do nothing. I also have never seen students seek any attention I am willing to give. They want a certain type of attention. Ditto for a tangible. Only rarely do children respond to any tangible-they prefer certain ones over others.

The IISCA method emphasizes the use of so-called “synthesized contingencies”. By “synthesized contingency”, Dr. Hanley (and I) is referring to the phenomenon that children tend to escape from tasks to play with toys while seeking attention from a preferred adult (i.e.,  escape to attention + tangible). Some children escape to predictability (i.e., they flee from unpredictability or transition to force the typical schedule). Others are rewarded by what is called “mand compliance”, or having adults comply with verbal demands. This is clearly a form of attention seeking, but it is qualitatively different enough that it needs its own category. Interestingly, in his presentations Dr. Hanlkey makes a point I agree with entirely:

The IISCA procedure also emphasizes using the specific reinforcers that the child responds maximally to. Oftentimes, they use whatever stimuli the parents bring with the child. The assumption is that there is a reason why the family brought those items: that reason is that those items sooth and calm the child.

Also, the IISCA emphasizes focusing on what are called precursor behaviors to the major problem behaviors. In other words, if a child always growls or yells prior to physically aggressing, then the experimenter or analysis terminates trials when the child growls or yells, rather than waiting until they engage in physical aggression.

Of interest is that the average IISCA takes approximately 30 minutes for the open-ended interview and then 30 minutes for the functional analysis. There are three 5-minute control sessions wherein the child is given access to reinforcers (even if that is adult attention, iPad, etc) regardless their behaviors. There are then three 5-minute sessions wherein the child is given demands and separated from the reinforcers. Once the child shows precursor behaviors the reinforcement is returned and the data are taken. Since the IISCA is only evaluating the synthesized contingency, there are only 2 conditions (control, experiment) and if there is differentiation, the IISCA is finished quickly (in one report Dr. Hanley suggests an IISCA can be performed in 5 minutes).

Another cool part with the IISCA, it has been shown to be easy enough a protocol that parents and teachers can replicate the findings of the experimenters, with only minimal training and assistance through Skype (manuscript here).

Is the IISCA really better?

Yes. Much better. In pretty much every way you can imagine.

I say this because the treatment informed by the IISCA is functional communication training (FCT). This means training the child to use communication to get reinforcement rather than using misbehavior to fulfill needs. Based on the literature, using the information obtained from the IISCA results in faster, more efficient, and longer lasting FCT than using information obtained through a standard functional analysis.  Below is a figure from a Master’s thesis showing that treatment based on standard functional assessments are much less reliable than those informed by an IISCA.

Basically, what this shows is that the kids are much more willing to use FCT to get their needs met if they are offered the entire reward (i.e., the synthesized contingency) rather than isolated attention, escape, or access to a tangible. They can even be taught to tolerate being told, “No” and tolerate rather long delays before receiving rewards because the reward is so salient when it is finally presented.

Conclusion

Overall, I am excited to see this new direction in the ABA community and I hope it will be implemented in the larger ABA community. For my part, I have already used the IISCA method twice this month and it works. It is basically the method I was using before to “figure out what is making this kid tick” as I put it, but it is nice to finally have a formalized method to follow so I do not have to keep justifying my methods that always appear at odds with what other people are doing. I can vouch for the rapidity of the method and the validity of the data. The kids also seem to have much more fun during this type of functional analysis compared to the standard functional analysis.

In my opinion, although Dr. Hanley’s ideas are new and novel, we can and should begin to use them in schools to help our kiddos overcome behavioral challenges to access their education. This will improve these students’ quality of life greatly, and in the end that is all we are after.