ASD is Not a 'Magical Mystery Tour;' Anxiety in Advanced Learners with ASD

Autism Spectrum Disorder; unlike Downs, Angelman or Fragile X, for instance, is far more an umbrella term than a primary diagnostic category. Prevalence rates, while much higher than thought when I started my involvement in autism services closing in on 40 years ago, continue intensely debated. One particular tendency I've observed and found troubling has been the clinical habit to isolate out selected behavior characteristics, to particularly include the presence of stereotypy and/or perseverative behaviors, as a way to diagnose 'ASD.'

There definitely is a great deal more to an accurate and accurately representative diagnosis of ASD than these two very common characteristics of human behavior....

Another important point is that autism is a remarkably heterogeneous disorder which expresses across individuals in incredibly diverse and divergent ways. This reality means that presuming a uniform cause, instructional methodology, behavioral or medical 'treatment(s)' is neither logical nor accurate. While specific methods/strategies may greatly help selected individuals, there is no singular or explicit behavioral, instructional or medical approach for persons with autism which is uniquely used for persons with ASD.

Furthermore, autism is not a 'disease. ' Autism is not a mental illness and autism does not 'predict' anxiety or any other specific behavioral characteristic. Autism is not a psychotic disorder and 'meltdown' behaviors are not an unavoidable aspect of ASD in the same way that seizures connect to a diagnosis of epilepsy or wheezing to asthma. When more disruptive behaviors do occur, they are not 'caused' by autism or the more often overgeneralized neurological aspects of autism.

Kids with autism aren't presumptively benefitted by weighted vests, scented rooms, free stim time, messy arrays or the use of fidget toys. A subset may receive selective benefit but when done more prescriptively and deliberately. Many others receive no return at all; still others don't really care.

A large number of children with autism may quickly learn, however, how to trigger these 'interventions' for the more personal purpose of functional escape/avoidance, attention and/or access to items/activities of interest. And when children do learn how to deliberately and functionally trigger these kinds of interventions, their actions may then be quickly misinterpreted as a declaration of the particular intervention's 'effectiveness.'

For still another subset, however, these types of interventions can be dramatically counterproductive.

For instance, after I recently convinced the teacher in a 'behavior' classroom to turn off the oil scented mist machine, two or three specific students became less chronically escalated/agitated. (To note: my anecdotal assessment had correctly identified at least two of the students who were specifically bothered by the constant scent.) That hyper or hypo-sensory reactivity and/or dis-integration can be relevant to a subset of persons with autism does not and should not then so categorize and stereotype the entire autism community.

And that a subset of more advanced learners with autism can become overly anxious; have a strong anxiety response is also and absolutely not an unavoidable 'part' or aspect of ASD. It is, instead, much more often a predictable and fully intervenable reaction to explicit and identifiable environmental events/conditions, interactions and other variables.

As a for instance, older advanced learners with autism will often - as would be expected by adolescents and teens - seek out peer friends and social groups. Unlike other young people, those with ASD may mess up these attempts due to missing social competencies and/or other personal idiosyncrasies which are then resisted by peers. When peers walk away; may make fun or bully the child with ASD can then become deeply frustrated - develop 'Anxiety' - since that young person with ASD will more often not at all understand why their attempts are failing.

Note: I do not like the more routinely - and inaccurately - used 'high' and 'low' functioning labels opting, instead, for 'early' to more 'advanced learner.'

But a consistent lack of social/peer success is not caused by 'anxiety' and treating it as an 'Anxiety Disorder' more often only serves to cement in the failure; kind of blames the child for an 'illness process' not actually relevant or present. This lack of social success and the understandably resulting frustration (often interpreted as 'anxiety') is more directly connected to a 'Crisis of Instruction;' that is, a need to directly teach and support peer access and participation. Assessing for and teaching targeted skill development, therefore, is the 'treatment' for this social 'Anxiety Disorder.'

So how can 'anxiety' be differentially understood and responded to as a Clinical Behavioral Analyst in order to break free of the more typical, and interfering, mentalistic framework?

First consider that 'anxiety' is a typical and needed human behavior.

'Anxiety' over the potential for painful death, substantial damage to one's car and/or significant traffic fines keeps (most of) us from driving 120mph on the highways. We study for tests out of an 'anxiety' we may fail and have to repeat work already done. We properly handle and cook food for the anxiety of becoming ill. The list goes on and our 'goal' is not to end anxiety and the natural, and often helpful, anxiety response....

Though a typical and often productive human response, anxiety can also become debilitating and a direct interference in day to day functioning. When this occurs, the Behavior Analyst must consider how anxiety manifests from a behavioral analytic framework and see it as a kind of 'functional psychopathology.'

Fundamentally, anxiety can be behavioral defined as when an individual evolves (develops) over expectations for/misperceptions about inconsistent and/or unpredictable aversive consequences/outcomes and/or the unexpected loss of, or uncertainty about, access to intended/sought after and strongly desired reinforcement.

Such a dynamic can then lead to predictable - and instructionally/behaviorally intervenable - functional relationships often connected to the resulting cognitive errors ('errors in thinking'). The relevance of private events, those 'within the skin,' derived relationships and resulting covert functional relationships also becomes of primary relevance to a behavioral analytic model of anxiety.

Why behavior analysts should study emotion: the example of anxiety, Friman & Hayes, 1998

Allow me an example.

A while back I was asked to consult with a very bright 12 year old boy identified with Aspergers Syndrome who strongly perseverated on home sprinkler systems and portable fire extinguishers. He became quite knowledgeable, too, by way of sending for and memorizing the manufacturer's engineering specs on selected systems. I was a professionally trained and very active firefighter at the time and still couldn't fully keep up with his rather detailed knowledge!

When he approached kids at school who he wanted to get to know better; with whom he wanted to participate in shared activities, his primary strategy was to regale them with detailed information about sprinkler systems and fire extinguishers. Needless to say, this wasn't particularly effective. Peers blew him off and he came home often aggressive and disruptive - very frustrated/high 'anxiety' - since he truly had NO idea why he couldn't make a single friend. Though he expected social reinforcement for his efforts, the reality regularly turned out deeply aversive.

So we can say that his 'anxiety' was either the cause for or a result of his repeated peer failure. As a 'cause,' medications and/or more decontextualized counseling interventions are most often recommended. But anxiety resulting from repeated failure at and then not understanding why he was so unsuccessful with regards to his highly desired attempts at peer friendships means the most effective 'treatment model' is environmental; it's structural; it's behavioral and, above all, instructional.

We worked together to help him better recognize what was going on and what he could do differently. With the 12 year old and his parents, we identified and pursued specific behavioral/instructional objectives which then increased his probabilities of success while decreasing the 'anxiety response' and functionally related aggression/disruptive behaviors which often targeted his parents.

Success; and Success by way of individualized instruction became the primary treatment for this child's diagnostically (mis)identified 'Anxiety Disorder.'

While the cause of ASD remains a mystery; how to help, support, teach and most effectively intervene is not at all mysterious. Taking the time to first know the person, the person's family/primary caregivers/supporters and environment takes precedent. Better understanding and anticipating conditions which are more likely to elicit an anxiety response, for instance, is of great benefit towards providing support and individualized intervention.

A second precedent must be letting go - completely - of the assumption that a diagnosis of 'autism' infers deficits, individual weaknesses, specific response patterns like anxiety and the need for imposed, external interventions.

We don't need to 'combat autism' but must first listen to and hear persons with autism and their families. We need to recognize that rather than a presumed weakness, autism reflects more on difference, diversity and unique strengths. Autism is reflected through individual personality, temperament, personal preference and style. People are autism rather than autism is people!

We also need to recognize that the 'problem' may not be autism but how autism and persons with autism are perceived. Or....to paraphrase Walt Kelly...though we may presume a problem, the problem may be us!

I've been working with and supporting persons with autism and those with many other diverse needs for a great many years and have watched a lot of trends, cycles and ‘promises’ come and go. Pushing the many myths of autism; making autism into a kind of ‘magical mystery tour’ has helped a lot of people make lots of money while more often confusing and misleading families and, even more, children and adults with autism.

Now, I also don't intend at all to claim or presume that selective alternative treatments and/or medical supports always do not - for some persons with autism - have a valuable role to play. A primary message is that the diagnosis of autism, alone, does not in any way identify or determine what to do next and that it does not inform with regards to treatment or areas of needed support.

Also of deep relevance is that alternative treatments; medical or otherwise, must be pursued with great and extremely individualized consideration and great caution. Some may have some use. Other may not help while being expensive. Still others can be dangerous. But when there is individually determined relevance, these must remain a part of an ongoing and more comprehensive approach supported by the field of Applied Behavior Analysis.

At the same time, none of this will go very far for children (and those older) who still only have minimal/limited, functional communication; remain largely in need of 24 hour a day supervision; when bedtime, mealtime and/or toileting remains a struggle; the individual doesn't interact with or get enjoyment from being with peers; is a respondent rather than a participant in their world; isn't successful at home or school...or can't enjoy increasing preference, independence and autonomy.

That there remains huge clinical and diagnostic debate and disagreement about what is and who should even be identified as ASD also means that claims to any uniform or single treatment process/framework and/or characteristics for those identified as ASD should raise many bright red flags.

This, just as assumptions that autism = anxiety disorders; autism = 'meltdowns;' (or) autism = sensory dis-integration must be fully and finally released.

Proclaiming uniform characteristics and/or treatment processes greatly risks misleading a great many often stressed and always loving, hardworking and absolutely devoted families who may then pull away from what we know works; what we know can and will help. I've seen, and been saddened by, this dynamic many times over the years. Such presumptions also only furthers the very same stereotyping of ASD and persons with ASD that so many continue to work so hard to end.

What works; that which is 'best practice' becomes the priority. And best practice must always prioritize effective and individualized/differentiated instructional practices. Good teaching is, after all, a key.

There is no way around the fact that such a comprehensive process takes work and a strong working partnership. It takes time, demands a highly individualized understanding of the person with autism and those around him/her and full system involvement. Though having more structured medical clinical treatment may still come as medical and interconnected research continues on autism and related disorders, we are not close to there yet.

I've been making 'house calls,' working in the community and schools and providing family support for a very long time and know firsthand that we can be consistently very effective to actively include those children who have been the most challenging...the hardest to reach and teach...where the quality of life of the child and family is at the highest on-going risk.

But this can still only be done one child (or adult) with autism and their families/caregivers at a time. We do not, and should not presume, to either treat or respond to the 'diagnosis' but each individual – and each family – one at a time.

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#autism #ASD #Anxiety #appliedbehavioranalysis