When it
comes to autism, perhaps the biggest obstacle is not scientific knowledge, but
human psychology itself.
We want
certainty: lab tests, clear causes, definitive diagnoses, and effective
treatments. Yet autism resists all of them. It exists at the intersection of
biology, behavior, and more recently culture. It exposes how much of medicine
is still filtered through the lens of human perception.
The power
of belief: Placebo and Nocebo
Autism
clinical trials reveal a striking pattern, the placebo group often does
surprisingly well. Parents, teachers, and clinicians report improvements in
social engagement, eye contact, or irritability even when the child receives no
active compound.
That is not
fraud — it is psychology. Expectations shape observations. Parents want to see
improvement; clinicians want to believe their interventions work (some clinicians
even seem to want the interventions of others not to work!). The placebo effect
amplifies hope into perceived progress.
The opposite
is also true. If a therapy is expected to fail, or cause side effects, people
tend to notice negative changes. That is the nocebo effect — our beliefs
shaping our biology, or at least our perception of it.
Beyond placebo
and nocebo: other human effects that shape perception
The placebo
and nocebo effects are just the beginning. Human psychology is full of subtle
forces that can make a treatment appear to work, or fail, even when biology
remains unchanged. These effects are especially powerful in autism research,
where progress is measured through behavior rather than lab tests.
1. The
Hawthorne effect
People often
change their behavior simply because they know they are being observed. Parents
in a trial may interact more positively with their child, or teachers may give
extra encouragement. The child then behaves better—not because of the therapy,
but because the social environment has changed.
The
Hawthorne effect is a type of human behavior reactivity: individuals modify
their behavior simply because they know they are being observed. It was first
described in studies during the 1920s at the Hawthorne Works, a Western
Electric plant in Illinois, where workers’ productivity appeared to improve
under different lighting conditions and work structures. Later analysis
suggested that the apparent gains were likely due to the novelty of being
studied and the extra attention workers received, rather than the experimental
changes themselves.
2.
Observer expectancy
Researchers
and clinicians, consciously or not, tend to see what they expect to see. A
therapist who believes a treatment is promising may rate ambiguous behaviors
more favorably. Even small cues like tone, enthusiasm or body language can
subtly influence outcomes.
3. The caregiver
effect
When parents
believe something is helping, they naturally act differently: calmer, more
patient, more hopeful. The child senses this, and behavior improves. The
apparent “treatment effect” is really a change in the social dynamic, not the
biology of the child.
4.
Regression to the mean
Children may
join studies when their behaviors are at their worst. Over time, things tend to
return toward their usual level, whether or not any treatment was effective.
Without biological markers, this natural recovery can look like success.
5.
Confirmation bias
We notice
what confirms our hopes and ignore what does not. A parent who wants to see
progress will remember good days vividly, while quietly forgetting setbacks.
Over time, that bias creates a story of steady improvement—even when change is
uneven or minimal.
6.
Natural maturation
Children
grow and change. Speech, self-regulation, and awareness can all improve simply
with time and development. Without objective measures, it is hard to tell
whether improvement came from therapy or from ordinary maturation.
7. The therapeutic
alliance
Sometimes,
what helps most is the sense of being understood. A caring professional who
listens and offers hope can have a measurable calming effect on both parent and
child. It feels like progress because it is, psychological progress, but it’s
not necessarily biological.
8. The expectancy
cycle
These forces
often combine. Parents, teachers, and researchers all expect improvement, and
those expectations subtly reinforce each other. Everyone feels encouraged,
interactions improve, and the child responds in kind.
Taken
together, these human effects can create the illusion of treatment success
without any measurable biological change.
They do not
make research meaningless, but they remind us that, in autism, we are often
studying human perception as much as human biology.
Measuring
what can’t be measured
Unlike
diabetes or infections, autism lacks objective biological markers. There is no
blood test, no scan, no lab value that confirms progress. Autism trials rely
almost entirely on soft behavioral endpoints like eye contact, social
reciprocity, verbal skills, repetitive behaviors.
But these
are all subjective judgments. One parent’s “huge improvement” is another’s
“slight change.” Even trained clinicians often disagree. This introduces a
layer of human variability that overwhelms any small biological signal a
treatment might produce.
A contrast:
When biology speaks clearly
Imagine your
nine-year-old child with autism becomes irritable, withdrawn, and starts
covering his ears. His behavior worsens rapidly.
You take him
to the doctor, who looks in his ear and immediately sees the problem — an
infection. The diagnosis itself does not make the pain go away, and the child’s
behaviors do not improve simply from being told what is wrong. But after a week
on antibiotics, the infection clears. The pain disappears. His sleep
normalizes. His behaviors return to baseline.
Here,
biology is clear. The cause was physical, the treatment targeted it, and the
outcome was measurable. There is no placebo interpretation involved, just the
cause-and-effect precision that medicine aspires to.
That clarity
is what is usually missing in autism research.
The comfort
of a diagnosis
By contrast,
many adults receiving a mild autism diagnosis report feeling relief, they finally “understand themselves.” Yet
nothing physical has changed. No inflammation has resolved, no neurotransmitter
has been balanced. What changed was self-perception.
A diagnosis
can provide comfort, identity, and even community. It answers the deeply human
need to make sense of who we are. But it is a psychological event, not a
biological one.
The paradox
of mild autism
My mother, a
doctor, once remarked how curious it is that so many people are now diagnosed
with mild autism — yet there is no therapy or even structured follow-up. The
diagnosis is meant to help, but what comes next?
Parents of
children with severe autism often feel alienated by this trend. They watch
celebrities and influencers describe themselves as autistic for being
introverted or socially anxious, while their own children are non-verbal,
incontinent, and dependent for life. They feel that the term autism has been
stretched so far that it risks losing meaning.
When autism
is severe, there is less room for subjectivity
In cases of
severe autism, the boundaries between perception and reality become clearer.
There is less room for interpretation because the behaviors are so obvious, so
measurable, and often so disabling that they cannot be mistaken for personality
differences.
When a child
is non-verbal, does not respond to their name, cannot feed or toilet
independently, and shows self-injurious or highly repetitive behaviors,
progress can be tracked in concrete ways. A therapy either helps the child
communicate a few new words, reduces self-harm, improves sleep, or it does not.
There is far less ambiguity.
A parent of
a severely autistic child does not need rating scales to know whether their
child’s aggression or anxiety has improved, they can see it in daily life. If
the child goes from sleeping two hours a night to sleeping eight, that is not a
placebo effect. If self-injury stops after an antibiotic or anti-inflammatory,
that is a biological clue, not a subjective impression.
Because of
this, severe autism may actually offer better opportunities for scientific
understanding. The behaviors are consistent and pronounced, and measurable
improvements can point to real biological mechanisms—whether immune, metabolic,
or neurological.
However,
these children are also the most neglected by research. Most autism trials
exclude them, preferring verbal, higher-functioning participants who can follow
instructions and complete rating scales. Ironically, this biases autism science
toward the most subjective end of the spectrum, the very group where human
psychology most distorts perception.
If we want
to understand autism’s biology, it may be wiser to focus more on those with
clear and measurable impairments, where psychology plays a smaller role and
biology has a chance to reveal itself.
Diagnosis
as identity
There is a
broader cultural pattern at work. Increasingly, psychiatric labels like ADHD,
bipolar disorder, and autism have become identity markers — especially among
younger adults. They bring belonging, validation, and sometimes even social
capital.
But it
raises a question, does the diagnosis help because it changes biology, or
because it reshapes how a person feels about their life story?
For some, the label provides understanding. For others, it becomes a kind of permission, a way to explain why life did not turn out to plan. Yet life rarely does, for anyone, neurodiverse or not.
A broader
cultural shift
The rise in
self-diagnosed autism overlaps with another social trend, more young people
identifying as LGBTQ+. Both movements challenge norms and offer belonging to
those who feel different. Both provide a ready-made narrative that transforms
uncertainty into identity.
In that
sense, autism today has become as much a social phenomenon as a medical one.
The human
factor in science
Biology is
rarely black and white, especially in neuroscience. Each brain is unique, and
behavior reflects countless interacting systems. But when objective biomarkers
are absent, psychology fills the void — through expectation, perception, and
interpretation.
That is why
autism remains so difficult to “treat.” Our understanding is constrained not
only by biology, but by human psychology — the biases, hopes, and needs that
color how we define and measure improvement.
Until we
learn to separate biological change from psychological interpretation, human
psychology will remain the limiting factor in how we deal with autism.
