Concerns Raised About Overlapping Autism Research

[proverbialwisdom]

Source: Disability Scoop/U.S. Government Accountability Of

By MICHELLE DIAMENT
November 22, 2013

Most federally-funded autism research is “potentially duplicative,” according to a new government report that finds coordination and oversight lacking.

No less than 12 federal agencies allocated $1.4 billion for autism research, awareness projects, trainings and other related activities between 2008 and 2012. In many cases, however, the efforts of these agencies may have overlapped.
In a report released this week, the U.S. Government Accountability Office found that 84 percent of autism research projects during the four-year period had the potential to be redundant.

The finding was based on a review of how projects aligned with goals identified in a strategic plan outlining priorities for federal autism research. The plan is produced annually by the Interagency Autism Coordinating Committee, or IACC, a federal advisory panel comprised of government officials and members of the autism community.

In one case, the GAO found that five agencies funded 20 projects all focusing on improving dissemination and implementation of interventions and services in diverse community settings. Collectively, the projects cost over $15 million.

Read more: http://www.disabilityscoop.com/2013/11/22/concerns-overlapping-research/18913/

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REPORT: http://www.gao.gov/products/GAO-14-16

Link from research by Anne Dachel.

[Igel]

1. If it's actual research, good.

If it can't be reproduced, it shouldn't be the basis of revising a lot of people's lives and forming the basis of policy decisions.

A lot of scientific research can't be reproduced, esp. in "socially relevant" fields where people want to make a difference and usually think they know how to make a difference. Wanting to control people (for good for for bad) and wanting to find the cold, unbiased truth wherever the quest takes you are typically not compatible goals.

It's really bad when the best predictor of an experiment's outcome is the researcher's belief in what outcome is expected. It means there's no agreement on the facts or observations, much less the analysis or conclusions.


Then there are implementation issues--propagandizing, providing service, etc. It works or it doesn't, and if it doesn't you find out and can have a nice feedback loop as a corrective.

[Quantess]

2. Worse things have happened.

This seems like a very minor complaint.

[proverbialwisdom]

3. Many stakeholders have different views. Surely, it is complacent/arrogant to disregard all critics.

COMMENTS:

S says:
November 22, 2013 at 10:49 am

We don’t need anymore eye gazing studies. We do need more studies on the link between microglial dysfunction, environmental toxins and impacts to synaptic pruning. We need more studies on mitochondrial dysfunction and autism and the role of the immune system in autism. We also need more studies on why some children regressed after getting vaccines- to my knowledge the CDC has never done any follow up studies on those children who the HHS agreed suffered severe adverse reaction to vaccines leading to encephalopathy- what caused the reaction in these children?? Immune hypersensitivity?

SB says:
November 22, 2013 at 9:35 am

How unscientific science is! It would be good if a democratic element was introduced – a site where ASDs and parents of ASDs could nominate areas which they feel are important for research.
They urgently need to work out the different sub-groups by signs and symptoms. Without that their results can confuse rather than elucidate.
And I don’t think any research has yet examined iron levels in ASDs alongside markers for inflammation, for example – a very basic piece of work, not that expensive to do, surely? If there is heightened incidence of anemia of inflammation in a sub-section of ASDs then that would explain a lot about behaviour.
So far an awful lot of scientists have had their mortgages paid for years with no discernible improvement for the children and adults they are supposed to be serving.

[lumberjack_jeff]

4. Is cancer research similarly "potentially duplicative"?

If so, I don't see the problem. $15 million is pretty trivial for a disorder that affects 1% of people.

I think a degree of coordination is appropriate, but interventions and the communities in which those interventions must be performed are as diverse as the manifestations of autism spectrum disorders.

[yurbud]

5. Until the cut corporate subsidies, I won't worry too much about a fraction as much spent on autism

research

[yurbud]

6. Has the GAO done any studies on whether privatization is a scam?

Both privatization at the federal level, and privatization of public education?