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.
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.
|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|
|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|
|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|
|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.