How to get accurate results on therapy research

I am new to this forum. I thought this might be a good place to express some questions I had after attending the Northwest Louisiana Autism forum.
I heard a talk given by a group out of Austin Texas that has ABA and some experimental dietary and other approaches at "recovery". This is a term I am very uncomfortable with in the situations they described.
They described research results of various therapies and showed videos of various children before and after.
1. How can it be research if their is no scientific method, and no 'check' without treatment for comparison?
2. Since withholding treatment doesn't seem like an option they will consider, how can we ever know if these same children would have recovered without any intervention?
As a person carrying the broad autism phenotype, I am concerned how much of this type of speculation is leading current research and how we can make it more accurate.
For example, my sister and I both have children that also display the Broad autism phentotype. She also has a child with Kanner's. Before we discovered the existence of autism, and it's existence in our family (confirmed when her son was diagnosed and we figured out the HFA that had been missed in others)our children were all latetalking without an explanation. My oldest daughter did not talk until 4, not until 4 1/2 where I could understand her. She then rapidly improved once communication was established and her frustration levels decreased.
My middle child starting talking at age 3. Both of them did not have ABA or any other ASD therapies, rather they started totally when they were ready and able to communicate. Granted, we had traditional speech therapy, but none of the expensive therapies they are telling parents are a necessity.
This followed the patterns exactly of several of the children in the videos they claim they "recovered' with $100,000 worth of ABA, dietary, and other therapies. These children were very mild on the spectrum (like mine and my sister's), and I theorize would have recovered at about that age without the therapies. The difference is, I am not publishing my theories or sending out videos convincing people to spend tons of hard-earned money to "recover" these kids.
Does anyone in the research community share my concerns? Many of these 'recoveries" are not really recoveries since in year's past children were just known as latetalkers with quirky behaviors and now are being diagnosed as HFA, PDD-NOS, or similar diagnoses. I fear these cases will skew the data of the more sever cases that we should be focusing on.

Hi loozianaman, and welcome to IAN.

In answer to your question, the research community is very much aware of the need to identify which therapies and treatments are being most often used by families, and the need to get them tested in a scientific way as quickly as possible.

ABA, by the way, does have significant evidence to support its use, but there are many variations even on ABA - programs that combine some form of behavioral intervention with a child-led approach -- that haven't been tested as thoroughly, nor have two competing early intervention programs often been compared side by side. Still, there is a great deal of evidence that early behavioral intervention in general can make a huge difference for many children. See Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder: http://www.ncbi.nlm.nih.gov/pubmed/18606031

On the other hand, you are also correct: children on the autism spectrum, just like other children, do develop along a natural trajectory and can make many strides as they mature. Of course, it is also always wise to keep in mind that autism is a spectrum disorder, and experiences vary widely depending on the combination of gifts and challenges embodied in any one individual with ASD.

It's hard for parents to know what evidence supports a treatment, because so often there are testimonials or videos or whatever that are very encouraging, but which have also been prepared by the people invested in (or selling) the treatment. That can look like research, but of course is far less credible than unbiased research carried out by neutral parties. The "gold standard" of putting a treatment to the test is the randomized double-blind clinical trial, or as close as you can get to it. You can read about why here: http://www.iancommunity.org/cs/understanding_research/randomized_controlled_trials

You may also find our article on how to evaluate a treatment of interest, as it addresses several of the points you raised in your post: http://www.iancommunity.org/cs/therapies_treatments/evaluating_treatments

Again, welcome to IAN and best wishes to you and your family.