by Barry K. Morris B.ScWk
A parent is faced by a bewildering array of interventions
to use when their child has been diagnosed as being on the autism spectrum. Which ones are the best? Which will suit the child? Should
I trust the judgment of other parents, psychologists or researchers?
Let's picture some scenarios.
A parent tries a range of interventions for her
child diagnosed with Asperger's
syndrome. They have varying degrees of effect. Jumping around
the Internet, she finds a vitamin supplement and figures it is worth
trying. Over the next six months, there are dramatic improvements.
In her joy, she passes this information on to every parent possible
through internet forums. Unknown to her, the supplement had no effect.
Her child experienced a natural 'growth spurt' in her development.
This vitamin supplement is tried by another parent
when he reads this on a forum. Unknown to him, his daughter had
a vitamin deficiency but unrelated to his daughter's Autism. There
is a dramatic improvement and he is quick to pass on the good news
that this could be the cure that researchers have missed.
A couple make huge sacrifices to put their child
into a full-time one-on-one intervention program that is experimental
but has had good reviews by some parents. There are some improvements,
but not beyond what could be expected without the intervention.
However, the parents have sold their home, downgraded their car
and now live very simply to afford the therapy, and subconsciously
don't want to accept that these sacrifices may have been in vain.
They jump on the smallest improvement and believe the program is
making a big difference.
A shady character aiming to exploit parents markets
a new intervention for children on the autism spectrum. The website
is glossy, it is packed with rave reviews by parents, although strangely
there isn't anything in the forums or literature about it. It is
expensive so it must be a good intervention.
Although we value our logical rational minds,
we are easily swayed by our emotions, internal biases, the beliefs
of others, and our own hopes and dreams - usually far more than
we realize. History is littered with examples of medications, counseling
styles and therapies that had rave reviews but were later proved
to be unfounded.
This article is not intended to denigrate every
intervention that doesn't have proper credentials from rigorous
testing. When research is lacking in so many areas, parents are
often left to do this research themselves, and no doubt there are
important interventions that could work well for their child, but
their efficacy hasn't been established yet. However, parents should
be aware of the best standards of proof that currently exist.
What is evidence-based medicine when it comes to autism?
Evidence-based medicine aims for the ideal that
healthcare professionals should make "conscientious, explicit,
and judicious use of current best evidence" in their everyday
practice. It categorizes different types of clinical evidence and
ranks them according to the strength of their freedom from the various
biases that beset medical research.
The strongest evidence for therapeutic interventions
is provided by randomized, double-blind, placebo-controlled trials
involving a homogeneous patient population and medical condition.
Although still fallible if not conducted properly, it is the highest
standard of proof that currently exists for the effectiveness of
For example, samples are randomized so the influence
such as age, social class, cultural background and nationality are
minimized. With Autism Spectrum Disorders, this is crucial because
as many parents know, what may work brilliantly for one child may
have no effect on another.
The actual intention of the research may be hidden
from participants so their feedback isn't influenced by the researchers'
expectations. In the case of medication, some participants will
receive a 'placebo', a drug that looks like the real thing but is
a fake, because our mind can actually make us feel better if we
think the drug is going to work. The same principle can work with
an expensive intervention, particularly if we have made many sacrifices
to get our child into it!
In contrast, patient testimonials, case reports,
and even expert opinion have less value as proof because of the
placebo effect, the biases inherent in observation and reporting
of cases, difficulties in ascertaining who is an expert, and more.
Evidence-based intervention implies not only clinical expertise,
but expertise in retrieving, interpreting, and applying the results
of scientific studies, and in communicating the risks and benefit
of different courses of action to parents.
The evidence, particularly that behind
drug treatments, has improved over the decades although there
is still little research on drugs for children on the autism spectrum.
Interventions such as Applied
Behavior Analysis are evidence-based as there has been plenty
of stringent research done over the years. But there are still many
types of interventions, particularly the biomedical ones, that haven't
been properly tested.
is a potential autism intervention evidence-based?
Even when there is evidence, you may not get it
unless you ask for it. When talking to a specialist about an intervention
you are considering for your child, ask for information on any rigorous
testing done. Ideally there should be articles they can produce
from peer-reviewed journals - this means that research findings
are reviewed by other specialists in a given field before being
If the intervention has no evidence-based foundation,
simply proceed with caution. It does not mean this intervention
won't work - it is simply missing the best proof possible so you
are forced to rely on anecdotal evidence from others, with all the
inaccuracy that can entail.
WhY ARE THERE SO FEW EVIDENCE-BASED interventions for autism?
Unfortunately research moves slowly, particularly
in the Autism field and it can take years for a new intervention
to become 'evidence-based'. It may take up to a decade for an intervention
to be confirmed or refuted, and even then the research findings
may still conflict with each other due to different methods and
samples. As a rough rule of thumb, be very wary of early interventions
that still don't have solid well-researched evidence after ten years
of entering the Autism arena.
Why isn't this evidence-based approach providing
quicker answers on the most effective interventions?
• These scientific studies are usually expensive,
time-consuming and difficult to set up
• What works for one child on the autism spectrum may not work
for other children
• Parents may not want their children to take part in time-consuming
• Researchers may have commercial backing which lead to bias in
• Human biases and errors from the researchers can easily invalidate
• It can be tricky separating intervention effects from a child's
natural development over time.
Finally, a key principle of the evidence-based
approach is that other researchers should be able to replicate the
results and provide further evidence. In other words, one study
may indicate a new intervention helps most children with Autism,
but this will not be widely accepted until similar research by others
adds to this evidence. An example of this is Applied Behavior Analysis
which has a wide range of research projects over the decades indicating
Criticism of evidence-based medicine
Critics of evidence-based medicine say lack of
evidence and lack of benefit are not the same, and that the more
data are pooled and aggregated, the more difficult it is to compare
the patients in the studies with the patient in front of the doctor
— that is, this approach applies to populations, not necessarily
to individuals. Some critics suggest that evidence-based medicine
discounts the value of clinical experience.
Many interventions for Autism Spectrum Disorders
do not have a strong literature base supporting them. In some cases,
this will be simply because the intervention simply does not benefit
the majority of children. However, there may be cases where the
expense or difficulty of conducting randomized double-blind placebo-controlled
trials means that funding sources play a role in what gets investigated.
Large randomized controlled trials are useful
for examining carefully defined medical conditions. The more complex
the patient population (e.g. severity of condition, co-morbid conditions,
etc) in the study, the more difficult it is to assess the treatment
effect. This is can be the case with Autism Spectrum Disorders.
Click here for the full
range of Autism and Asperger's fact sheets at www.autism-help.org
Click here to see the
Incidence of Autism fact sheet
Click here to see
the Incidence of Asperger's syndrome fact sheet
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