ASD 'levels'

With the DSM-5 in 2013, came ASD 'levels'. I wonder what other clinicians have made of this 'innovation' from the American Psychiatric Association.

'Requiring support', 'requiring substantial support', 'requiring very substantial support'. How do these descriptions fit in to current scientific or clinical understanding of autism? Or of psychology generally, or of child neurodevelopment?

To me they don't seem to fit at all. Autism remains poorly understood. A historical barrier to better understanding has been the assumption that autistic people lack intelligence, empathy, an emotional life, or anything to contribute to society. A more enlightened view has only developed very recently. To me it seems that autistic people who are now happy and successful adults, and can finally tell their story and have it heard - they've played as big a part in the tectonic shift in its conceptualisation, as any celebrated clinician or researcher.

One view on early child development is that it is based around the transmission of a society's culture to a young child, initially by their parents and other close adults. And soon enough by a broader range of sources. The meaning of 'culture' here is very broad, encompassing not only social customs, but knowledge about the physical world, 'folk psychology', and understanding of the emotional life of oneself and others.

A related perspective on the struggles which many autistic children face, is that they are just as intelligent, compassionate, and complex as any other human individual. But that for a number of reasons, they don't naturally, automatically, 'receive' the prevailing culture which those around them would otherwise (largely unconsciously) transmit to them. Modern experience shows that if the environment and interactions of an autistic child can be supported and modified in a way suited to their particular strengths and challenges, they do very well.

But how well this support and modification is done, by an adult in the hot seat, varies enormously in reality. This is partly due to the very powerful force of cultural conformity - some adults might never accept that there are many different but equally good ways to live one's life, outside the way they happened to be born into. An example of this is negative reactions, in our society but not all societies, to young kids who won't make eye contact with newly met adults.

But even well-intending adults may need to take on a lot more knowledge, in order to make things work for an autistic child in their charge.

What this means is that the question of how much support an autistic child 'requires', in reality depends as much on the knowledge, beliefs, and actions of the adults around them, as it does on the individual makeup of the autistic child. 

Why would the APA introduce such a conceptually flawed definitional layer, over what is already an increasingly incoherent construct? Why do so many Australian clinicians and professional bodies follow its lead, like the children of Hamelin?

I'll suggest an answer to just the first question. These 'levels' look to me to have been created entirely for the convenience of large funding and service bureaucracies. In the US that's health insurance companies, HMOs, or whatever they're called now. Enormous, quasi-private corporations. How handy that any non-clinical corporate worker can receive a documented 'level' of severity for each autistic child, for whom their job is to ration services. The levels don't have much clinical meaning, but they'll look good on paper.

The question of why so many Australian clinicians and professional bodies have meekly fallen into line is harder for me to fathom.

Perhaps a reader of this blog post might hazard an answer?

Further reading:

Frances AJ, "DSM-5 is guide not bible - ignore its ten worst changes" (2 Dec 2012) Psychology Today. https://www.psychologytoday.com/au/blog/dsm5-in-distress/201212/dsm-5-is-guide-not-bible-ignore-its-ten-worst-changes
Prof Frances is a prominent voice of reason on the DSM, has a big Twitter presence, and is an absolute legend.

Silberman S, "Neurotribes" (2015) Penguin Random House.

Grandin T, "Thinking in Pictures" (1995) Penguin Random House.


Further reading, on 'cultural transmission':

Vygotsky LS, "Thinking and speech (1934).  https://www.marxists.org/archive/vygotsky/works/words/Thinking-and-Speech.pdf

Bruner JS, "Child's talk" (1983) WW Norton.

Tomasello M et al., "Cultural learning" (1993) 16 Behavioral and Brain Sciences 495.

Neonatal imitation

I'm telling you, the baby started it!

What are these cheeky babies up to? They're demonstrating neonatal imitation, as newborns can from the moment they're born.

Researchers in 1977 got adults to demonstrate certain facial gestures - tongue protrusion, lip protrusion, or open mouth - for 15 seconds, to newborns. After this, the newborns produced the same facial gesture more often than other facial gestures, see Figure below. The same researchers in a later study found the same effect, in babies less than an hour old. They also showed that newborns imitate an adult poking their tongue to one side (a gesture which is less likely to be made spontaneously, or as a reflex).

There's still some controversy over whether this phenomenon is real. An alternative explanation is that the sight of the adult's face causes general arousal in the newborn, with increased actions of all sorts.

Assuming the phenomenon is real, how do newborns do it? How could a newborn translate their visual perception of an adult poking their tongue out, into their own facial motor action?

This is an example of an explanation proposed within an embodied cognition framework, which is quite different to those proposed within traditional frameworks. The debate partly turns on different ideas about the role which symbolic 'representation' plays in human thought and action.

Representation is central to the classical/computational model of brain function. A computer processes information by manipulating the physical patterns within its central processing unit; those physical patterns are themselves symbols/representations of external objects, actions, or concepts. By this model, neural function works the same - the physical pattern of a group of neurons and their connections (or perhaps even a single neuron) becomes a symbol for an external object, which the brain manipulates. This manipulation is what 'thought' or 'cognition' is.

An example of a cognitive representation is a mental map. If you can imagine life before Google Maps, we used to rely on street directories when driving somewhere new. We'd look at the street map, printed on paper, and try to commit the map to memory. It does seem like some sort of neural pattern must work as a representation of the paper map, in our brains. 

But other brain functions which might seem to involve this sort of representation, probably don't at all. Like in the outfielder problem, described in a previous post. It seems unlikely that a fielder catches a ball by mentally simulating the ball's trajectory, within a 3D mental map of the playing field.

Much of the scepticism about neonatal imitation has stemmed from an assumption that, for a newborn to imitate an adult's facial gesture, they'd have to use a mental representation of the gesture. Newborns "can visually observe a stimulus, store an abstract representation of that stimulus, and compare it shortly thereafter to a proprioceptive representation (i.e., their own movements)."

Could a newborn's brain really be capable of a such a computational feat?

My reading of the research is that neonatal imitation is real enough. But it might not involve this sort of representation.

An alternative explanation is that newborns might be born with functioning 'intermodal translation' - connection between the sensory channels of vision and proprioception (the sense of one's own body part positions in space). A close connection is needed between these channels, for an infant to master basic sensorimotor tasks such as reaching and grasping. But it's not been clear just how early this sensorimotor coordination might come online. Looking at a baby under 6 weeks age, doesn't seem like they have a lot of coordination going on.

But perhaps a skill like reaching and grasping isn't the first use which intermodal translation is put to. A tight and rich connection between visual perception and proprioception could also serve as a link between an infant seeing an adult's facial gesture, and the infant reproducing the same facial gesture. "In the case of the neonate, we do not have to posit some prior internal cognition that the infant is attempting to express or externalize through imitation. The infant has seen something, a facial gesture, and is expressing what she/he has seen, by taking up the capacity the infant has for that expressive movement on her/his own face."

That is, the infant doesn't need to use an abstract mental representation of the facial gesture she/he has just seen. The infant can skip that and go straight to a physical representation of it instead (on her/his own face).

If this intermodal translation idea is right, then it's likely that mirror neurons play a role. Mirror neurons, found in monkeys, are neurons which are active both when a monkey performs a particular motor action, and when the monkey sees another monkey perform that action. It's likely that mirror neurons operate in the human brain also (though their purported role has been overhyped, de rigeur for neuroscience findings).

Interesting stuff. But what then is the purpose of neonatal imitation? An obvious possibility is that it might have the "function of maintaining adult/infant social interaction until infants are capable of intentionally influencing such interactions themselves."

Ho hum. A more appealing explanation (to me anyway) is that it might play a foundational role in an infant's early sense of self, of others, and of intersubjectivity. Mind you, current evolutionary theory apparently contends that few if any evolutionary innovations serve only one purpose - so maybe it's a bit of both. (This principle would then also apply to intermodal translation - necessary for both basic sensorimotor performance, and for foundational social cognition.)

Further reading:

Gallagher S, "How the Body Shapes the Mind" (2005) Oxford University Press.


Related papers:

Meltzoff AN and Moore MK, "Imitation of facial and manual gestures by human neonates" (1977) 198 Science 75.

Meltzoff AN and Moore MK, "Imitation, memory, and the representation of persons" (1994) 17 Infant Behavior and Development 83.

Jones SS, "The development of imitation in infancy" (2009) 364 Philosophical Transactions of the Royal Society B 2325.

Bjorklund DF, "A note on neonatal imitation" (1987) 7 Developmental Review 86.

Antipsychotics - Risperidone

Risperidone is an appalling drug. Complications include irreversible involuntary movements, and rapid weight gain with severe metabolic derangement.

But the most surprising aspect of its increasing use, in increasingly young kids, is that it has no real therapeutic effect in this age group.

I assume that antipsychotics are genuinely therapeutic, in psychosis. That's the indication - schizophrenia - for which this drug class was developed. Auditory hallucinations, persecutory delusions, and illusions of malign external control over one's thoughts and actions, can be horrific experiences; antipsychotics can provide relief from that suffering.

But this isn't the role which antipsychotics play for children and (non-psychotic) adolescents. In Australia, the main 'indication' for Risperidone prescription in young kids is challenging behaviours in autistic children. (It's also given to non-autistic, non-psychotic adolescents, with extreme challenging/aggressive behaviours.)

The use of Risperidone in autistic children has government authority behind it, quite literally. Australia's Pharmaceutical Benefits Scheme specifically authorises its prescription in 'severe behavioural disturbances' in patients with Autism spectrum disorder under 18 years of age, 'under the supervision of a paediatrician or psychiatrist'.  

Risperidone doesn't, however, promote any particular cognitive function or developmental ability, in autistic kids, or in kids of any sort. It blunts their thoughts and actions - it turns their overall cognitive-behavioural volume down. It does so very reliably, which is why it's so helpful in extreme, aggressive or self-injurious behaviours.

Its effectiveness in dampening down all undesirable thoughts, speech and actions, should in itself cause concern over the associated consequences for the young person's neurodevelopment and learning.

I see quite a few kids for whom someone started Risperidone a while ago, where it seems that the kid's ongoing ingestion of the antipsychotic hasn't featured as a major clinical issue for regular consideration, by the prescriber. A 'set and forget' approach. The change most often made, over the 6 months or 5+ years of repeat prescriptions, is a regular nudging up of the dose.

One question which has struck me, is - if an antipsychotic really is indicated for a child or adolescent, why is it almost never prescribed PRN (as needed)? Why does the current default plan seem to be to commence regular doses, as if these drugs have SSRI pharmacokinetics, which they don't? Olanzapine wafers have been used PRN with good effect in emergency departments, for years.

I assume that the reason that PRN use hasn't taken off, is that antipsychotics are just so reliably effective at controlling behaviours. Without adequate medical explanation and advice, it's natural for a parent or carer who sees an antipsychotic provide relief from extreme behaviours once, to wonder why that relief can't be sustained. This phenomenon of 'dosing creep' is common enough with stimulants for ADHD - initially judicious use, with breaks on weekends and holidays; but which over months-years slides steadily into daily administration of ever increasing doses. But with ADHD and stimulants, the problem behaviours targeted are often merely annoying to adults - disruptive wisecracks in the classroom, failure to comply with household chores etc. Whereas the behaviours for which antipsychotics are started are often extreme - punching, kicking, detailed death threats, property damage, you name it.

One trap is for a younger kid (6-10yo) to be started on Risperidone for extreme behaviours like this, but without adding either adequate parent/carer support and understanding, or expert clinician involvement, to look a bit deeper than the behaviours alone. Many parents in this situation will resort to purely physical containment strategies. But as the child grows up, that becomes less and less physically feasible - especially if the drug has caused massive weight gain. A particular warning is warranted - it's never a good idea for an adult parent/carer to sit on a child, to restrain or control them. 

*****

PBS authorisations follow the advice of expert committees, made up of thought leaders in the relevant medical specialties. A while ago I went looking for the 'evidence base' of Risperidone's PBS approval, for use in autistic kids.

I think the 2002 NEJM paper shown in this post's header probably really kicked things off. It has now been cited 1424 times. Abstract Conclusion: 
"Risperidone was effective and well tolerated for the treatment of tantrums, aggression, or self-injurious behavior in children with autistic disorder." 

A key outcome measure was the "Irritability subscale of the Aberrant Behavior Checklist, as rated by the parent... and confirmed by a clinician".  What more could an overworked paediatrician ask for?

But this doesn't look like good science to me. Antipsychotic use in profoundly autistic kids with severe self-injury might be justified, especially in the short term. But 'irritability'? That's not a core clinical concept in practice, it doesn't appear in DSM definitions either. It's a plain English word, as liable to motivated misuse as any other word.

I'm sure that Risperidone does reliably address any 'irritability' shown by autistic kids. Administration of adequate doses of a barbiturate, or of the anaesthetic agent Propofol, or for that matter of cheap brandy or gin, would also address irritability in any patient, in the short term. Handcuffs or a straitjacket would also be effective in most cases.

*****

The number of antipsychotic prescriptions to children continues to climb. Meanwhile, in the US, pharma firm Johnson and Johnson has paid over $10 billion in damages, between 2013 and 2019, for its marketing of Risperidone. I wonder how much of the drug's increasing popularity in Australia arises from the apparent respectability which PBS authority listing might evoke, in the minds of some practitioners.

I posted this image to Twitter once, a pharmacist accused me of misleading the hivemind by using a non-zero x-axis. So I referred him to the chart's author, Rupert Murdoch. I haven't heard from the colleague since.

There are intermittent signs of pushback against this trend. The peak Australasian developmental paediatric body, the NBPSA, is working on a policy paper on the use of psychotropic medications in children and adolescents; the draft looks good. It's hard to know how it'll all play out.

Would I argue for the current PBS authority indication for Risperidone to be rescinded? No - the antidote to misguided, simplistic, authoritarian control over clinical practice isn't just simplistic authoritarian control of a different flavour.

Real progress will come from better individual clinical practice, across the board. There are good reasons for optimism on this front.

Most commonly, in my experience, the problems which arise from the prescribing of psychotropics to kids have little to do with a doctor's ignorance or knowledge of noradrenaline receptor dynamics, or the drug's second-order pharmacokinetics, or any of that.

One basic but reliable clinical rule of thumb is to not start a kid on any psychotropic medication, until all the non-drug ducks are lined up for him/her (tonight's post is brought to you by Mangled Metaphors Pty Ltd). Most often this is a simple enough clinical concept, but a major real-life pain in the posterior. If you think an 8yo will benefit from stimulants, but he's already down on himself from getting in trouble all the time at school, then don't start the med trial until the kid has an appointment booked with a psych or OT who you know and trust.

Successful drug prescribing entails the provision of meaningful explanations to bamboozled parents, meaningful interdisciplinary collaboration, and deft management of one's own counter-transference. And most of all, it takes time.

Papers:

McCracken JT et al, "Risperidone in children with autism and serious behavioral problems" (2002) 347 New England Journal of Medicine 314.

Panagiotopoulos C et al, "First do no harm: Promoting an evidence-based approach to atypical antipsychotic use in children and adolescents" (2010) 19 Journal of the Canadian Academy of Child and Adolescent Psychiatry 124.  [ http://www.bcchildrens.ca/mental-health-services-site/Documents/First%20Do%20No%20Harm.pdf ]