Sunday, October 23, 2011

Autism FACIAL Studies? Stop Wasting Autism Research Money and Our Children's Time


I am not going to provide a link to the recent reports of autism facial studies. I am just going to ask our learned academics and researchers to quit indulging their silly notions, quit wasting research dollars and quit wasting the time of autistic children an adults who might benefit from research aimed at finding causes, treatments and yes, even cures, for autism disorders.

I am the father  of a son with severe autistic disorder and intellectual disabilities.   He was diagnosed 13 1/2 years ago at age 2 with autistic disorder. We didn't seek medical attention for him because of his facial appearance which looked like any other child.  We weren't hoping to obtain an autism diagnosis for non existent autism services. We knew nothing about autism at that time and had barely even heard of it. We sought medical attention because of his lack of language development and because of some very unusual behaviors not because of his facial appearance.

Please don't tell me that a study of 40, 50, 60 or any other sample size tells us how to identify autistic children or adults. In my humble, common sense opinion, autism facial studies are a crock. 

Take a lesson from the late Dr. Ivar Lovaas and do some research that might actually help those whose lives are seriously impaired by autism disorders! 

7 comments:

Mommie that Gets It said...

I couldn't agree more!

All the best,

Heather

MJ said...

Harold,

I think there might be two aspects on this paper that you might not be considering.

First, if there are facial differences and if those differences are present from a young age, then they could be used as a way to identify children who need extra help. As I am sure you are well aware, early intervention can make a large difference. Any sort of empirical marker for autism that would take the guess work out of making a diagnosis would be helpful, even if it is something as strange as facial geometry.

Second, if there are dysmorphic features (as in facial difference) in autism, they can be used to help identify what biological pathways aren't working correctly. I am more than a little out of my field here, but when we took my daughters to a see geneticist, they spend a good deal of time looking for any dysmorphic features that might give a clue as to where to start looking for biological problems. They literally got out the tape measures and measured spacing and lengths of their entire bodies.

It is my understanding that this approach is commonly used when dealing with other developmental disorders.

Of course, when it comes to autism, there commonly aren't any dysmorphic features to be found. Children on the spectrum look "normal". But if there are subtle differences and these differences are real, it just might help move autism science forward.

I'm not saying that this paper is the greatest thing ever but there might be some value to pursuing this approach. On the scale of the Charge study to a Dawson, I think it would fall somewhere in between. Not the best possible use of funds but far from the a complete waste.

Katie Wright said...

I think this may be the dumbest research ever.

So many children are struggling w/ severe autism. Many cannot speak and even more have complex medical problems- for which no approved treatment exists.

When I enquire about the NIH's failure to research these issues I am told that there isn't enough $ and budgets are so tight. So when I see garbage like this I am incredulous.

There is ALREADY a huge amount of early dx research. It ONE area of ASD science that has been well funded. Dx ASD is not that difficult- we be not need to be measuring kids faces. I can dx a kid in 10 minutes 99.99 %ASD kids do not have dysmorphic features.

Forget this 17 points on the face nonsense and let's find biomarkers in the immune and GI system - work that will actually help children living NOW.

Anonymous said...

Do you know of any young men with autism who would be interested in participating in my study about their schooling experience in Canada. I am a PhD student researching how young men with autism experience school so as to learn more about what school is like for boys with asd. My stepson has autism and I want people to know more about what school is actually like for them. My study involves having a conversation with each young man about school and ask things like - what did you do at recess? What were classes like? My email address is unisareddington@gmail.com.

Shannon said...

I'm speechless. Autistic people look like everyone else. It's not like Down's, where there's an obvious facial indicator.

I'm appalled that funding is even approved to fund such a ridiculous study. Besides, what does the way they look matter in comparison to how they learn, interact with others and behave?

Anonymous said...

ASD is the Dx du jour. In the Academic world, publish or perish is THE operative principle, followed closely by funding... ASD in the proposal title ups the chances of securing both. How about this one, reported by Autism Jabberwocky: Can Bronchoscopic Airway Anatomy Be an Indicator of Autism? oh yeah: there's a good indicator for informing the need for early intervention. PLUS: study based on 49 patients, all seen in the same clinic - and the patients w/ASD presented the same anomoly... v. the population in that area overall? I'll bet the patients with ASD all had only one nose, also.

Anonymous said...

All this research is proving is further discrimination to be unleashed on people who may "look" autistic.

How is that going to help the parents if their child is further assaulted in a more effective manner?