Autism Library: Best Practices

Introduction


Many state and federal groups have studied the issue of what is documented to be best practice for identifying and treating (mostly young) children with autism. Here are some documents and links to some of these.

National Academy of Pediatrics


(Note: this is 7 megabytes)

Also sometimes called the National Research Council Report.  This is a major report and has a lot of influence--but it is not legally binding! It is by a government advisory group, but it isn't the law.  That said, anyone who recommends less than this report suggests needs to be prepared to defend that based on the individual needs of your child.  This report reviews many of the methodologies (like ABA, Floortime, etc.). They also have come to some conclusions about identification and treatment. They recommend 

" active engagement in intensive instructional programming for a minimum of the equivalent of a full school day, 5 days (at least 25 hours) a week, with full year programming varied according to the child's choronological age and developmental level" 

This "25 hour" recommendation is somewhat controversial.  It appears to be based on a study by Scheinkopf and Siegel that some have raised concerns about.

Key points-- minimum of 25 hours/week and  full year. At least where I am, this appears to be more of a maximum.  It pays to request reasons if you are offered less than this.  Ask the IEP team to defend a "low bid" with "peer reviewed" literature. 

If this whole book is daunting, here are the "conclusions and recommendations" 

Also, consider starting with one of the other best practice guides--the California one summarizes a lot and makes some clear recommendations.  The NY guide (especially on the website) gives brief recommendations with grades to how well supported the recommendations are.

Here are some more detailed comments on this report that were sent to me.

California Best Practices


This is a good starting place, even if you aren't in California.  There are a lot of descriptions of diagnostic and therapy methods. There aren't as many strong recommendations on therapies as in other sources though.


New York State Guidelines


This links to the website. There is also a book--it is free to residents of NY state, and inexpensive to everyone else.  The website is good in that it reviews the literature and grades the results. They tell you how many studies they looked at and how many they threw out as not strong scientifically.  The recommendations are clear.  The "evidence ratings" are:

Evidence Ratings: [A] = Strong [B] = Moderate [C] = Limited [D1] = Opinion/No evidence meeting criteria [D2] = Literature not reviewed

You do have to navigate around the website to find the information.  Here is a recommendation from chapter IV, Behavioral and Educational Approaches:

"It is recommended that intensive behavioral programs include as a minimum approximately 20 hours per week of individualized behavioral intervention using applied behavioral analysis techniques (not including time spent by parents). [A] "

The [A] is the "evidence rating".  Again, many would argue that there really isn't firm evidence for 20 hours (as opposed to 30 or 40) per week.


Main Autism Task Force


The report is here. This is from the MADSEC website.

Like the California guide, this gives a lot of descriptions and is a good place to start.  Like the NY guide, this gives some evaluations of methodologies have a proven effectiveness in the peer-reviewed literature. .


Colorado Manual for Working with Children with Autism Spectrum Disorders


The report is here.

This is another good starting place.  This has a brief introduction to autism, Colorado and federal resources and interventions. 

Draft New Zealand Evidence-Based Guideline for Autism Spectrum Disorders


The report is here.

This is a draft and from New Zealand, so it isn't going to carry much weight in the US.  However, it is a great resource for a summary of various studies.  In a manner similar to the NY state guidelins, they state is something is "expert opinion" or evidence based.  If there is evidence, they rate the "Level of Evidence" by according to 3 criteria.

Level of Evidence

Strong study where all or most of the validity criteria are met
+
Study where not all of the criteria are met but the results of the study are not likely to be affected
~ or Ø
Weak study were very few of the validity criteria are met and there is a high risk of bias
x

If you want to start looking up important studies yourself, this is a good starting place.  They give citations to a lot of studies.



Management of Children With Autism Spectrum Disorders


The report is here.


This is report from the American Academy of Pediatrics.  It covers multiple subjects, not just ABA.  The section on ABA starts on page 4.  There are some good quotes to use in support of insurance, such as:

"The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings. Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups."