Tuesday, June 2, 2009

Autism Science Foundation : Developmental Delay

If you look at the about autism page on the site for the Autism Science Foundation you are treated to what the foundation feels is important to know about autism. Given that this is a "science" organization you would think that the information would be the best that science has to offer but that doesn't seem to be the case.

It starts out with the standard boilerplate about the three core deficits and the fact that autism is more common in boys than girls. Then there is the language about how we know autism is a genetic condition because of twin studies and blah, blah, blah.

Then we hit this part about the different types of autism -
There are five Autism Spectrum Disorders, sometimes called Pervasive Developmental Disorders (PDD):
  • PDD-NOS (Pervasive Developmental Delay - Not Otherwise Specified).
  • Autism (sometimes referred to as Classic Autism, Early Infantile Autism, Childhood Autism, or Autistic Disorder)
  • Asperger Syndrome
  • Rett Syndrome
  • Childhood Disintegrative Disorder
Notice the word that I highlighted - delay. The term PDD-NOS has a very specific meaning and it isn't "pervasive development delay" - it means "pervasive development disorder". I thought that was a very curious mistake to make until I kept reading.

Continuing on the page you find the a section on how autism is diagnosed with the normal lip service to early diagnosis and intervention and a section on how common autism is with the typical reference to the trinity of denial.

Then you get to the meat of the page - what the ASD feels are appropriate treatments for autism and what they feel are inappropriate. In the appropriate or "evidence-based" treatments you find -
  1. Applied behavior analysis (ABA)
  2. Occupational therapy
  3. Speech therapy
  4. Physical therapy
In the inappropriate section entitled "Beware of Non-Evidence-Based Treatments" you find the following -
  1. Chelation
  2. Lupron protocol
  3. Hyperbaric oxygen therapy
  4. Gluten Free-Casein Free (GFCF) Diet
  5. Stem cell therapy
This inappropriate list is an strange grab bag of alternative treatments. None of these treatments except HBOT have much in the way of any evidence either for or against them - HBOT actually has some evidence showing that it does work. And I know from my own personal experience that the GFCF can make a huge difference in children with autism. But I digress.

But getting back to the usage of "delay" - I found this section on recovery in the "appropriate treatment" section -
Some service providers, celebrities, parent groups and medical practitioners may talk about “recovery” from autism. “Recovery” is a subjective term, and what one family calls "recovery" may be different for others. Parents should be skeptical of any health care provider holding out "recovery" as an option, as it often leads to expensive and ineffective treatments that can burden families with needless debt. Remember, autism is pervasive developmental delay, which means children will continue to develop, learn, gain skills and adapt as they age. Sometimes children lose their diagnosis altogether, leading to claims of recovery. Keep in mind that symptoms of autism change as a child develops.
And now the use of the word "delay" makes sense. The ASF appears to be pushing an unconventional view of how autism progresses in an attempt to defuse the whole "recovery" debate. They are saying, in effect, that even if a treatment appears to "recover" a child that it probably wasn't the treatment but rather the normal growth and development of the child that was responsible. After all autism is a "delay" and not a "disorder" - and that which is delayed may still come to pass when something that is disordered might not.

What they are saying is true, after a fashion. Almost every child with autism will progress on their own as they mature and grow older and the symptoms of autism will change over time. But that is a long way from the the implication that alternative treatments have no effect and precious few children with "lose their diagnosis altogether" simply as a function of aging.

This view of autism as a delay is not supported by science and is certainly not in line the stated mission of the ASF - "Our organization adheres to rigorous scientific standards and values".

That is unless the rigorous scientific standard is misrepresent the meaning of the disorder.


  1. Nice blog. Interesting post.

    My daughter had almost no progress in her development until we started some of the so-called "alternative treatments". We stuck with behavioral therapies alone and they just were not cutting it. The DAN! protocol has helped my daughter and improved the quality of her life tremendously.

    I don't know where they get this "naturally progress" thing from because my daughter sure wasn't. Truth be known she definitely had some underlying physical issues to be addressed.

  2. Thanks.

    We have had good luck combining alternative and traditional treatments as well. I don't think the ABA and speech therapy would be working nearly as well without addressing the other side at the same time.