It's entirely true that lack of evidence and lack of benefit are two different things. But I feel that anything that consistently produces a benefit can SHOW that benefit in scientific studies. Otherwise, all we have is FAITH. And I can have faith by praying. I don't need to shovel tons of money into protocols or "educational" programs that don't stand up to scientific scrutiny. Unfortunately, research takes money and volunteers. Both in short supply.
Thank you for posting this. It definitely shines a light on the main issue with Autism intervention.
sighYou know I can not write as eloquently as you. But that does not take away one iota from what I personally have witnessed!
All the rhetoric in the page evidence based autism interventions just detracts from people getting the help and support they are pleading to get!
just confuse the h- word out of people. This (serves my purposes) not jays but Barrymoris's I think this double talk is atrocious.
My aspergers diagnosed daughter of 14 would sit at dinner and eat, not joining in conservation until forced to, then any response usually off topic (what was on Kim's mind only). We then did the doctor prescribed DANGEROUS intervention! So dangerous that one has to get a new script monthly! This made her so wiggie we discontinued this course of treatment!
Years later we found some thing that works tremendously for us. You could say her on topic and timely conservations now at dinner is anecdotal. But I would dispute that tooth and nail. Kim can now and often does turn small talk into jesting with us. Just tonight she was concerned that sharing her dreams she had with people thinking she is weird. 5 months ago Kim could not have equated her dream with being weird!
With all this being said studies and literature takes lots of Money! And you also have to get some doctor, scientist to sign on to do this more Money! Most of them already have their own agenda. It is not taking on mine!
Mine is shouting Mona-Vie to the world!
Plants do not Lie!
Jay Jacobs #561-373-1930
Please go to a meeting in your local area listen, taste Mona-Vie Before you turn off. Because off is not knowing and not making an informed and educated decision.
The only way to tell if this will work for you is to try! Listening to others who have not tried this goes place.
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 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 autistic 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 early 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.
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 interventions.
For example, samples are randomized so the influence such as age, social class, cultural background and nationality are minimized. With Autistic 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 autistic 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.
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 allowed publication.
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.
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 autistic spectrum may not work
for other children
• Parents may not want their children to take part in time-consuming
research
• Researchers may have commercial backing which lead to bias in
their results
• Human biases and errors from the researchers can easily invalidate
their research
• 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 its effectiveness.
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 Autistic 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 Autistic Spectrum Disorders.