autism speaks

Has Autism Speaks gone over to the dark side?

Of all the organizations on the planet that could possibly discriminate against parents who have children with autism, the last one I thought would ever be on this list is Autism Speaks! Autism Speaks is the predominant autism advocacy organization set up to support research, treatment and advocacy for people with autism. The founders, Bob and Suzanne Wright, had a grandchild diagnosed with autism and had the motivation and wherewithal to make a significant difference for everyone touched by autism. Although I have been critical of Autism Speaks in the past, this latest development may set a new high water mark for hypocrisy.

I just read that Simone Greggs, a mother of a child with autism, had her job offer with Autism Speaks rescinded after she requested a minor accommodation to work from home one day per week since her son -- who is afflicted with autism -- returns home early on that day. Not only did Autism Speaks not grant her this trivial accommodation, they actually rescinded her job offer!


Ms. Greggs is now suing Autism Speaks, and I’m certain I speak for thousands in wishing her the best of luck!

Updating Autism Treatment Tools, One App at a Time

Why is it that even the most basic concepts are misunderstood in the field of autism intervention? I can understand why the media can’t get it right, but I am always surprised when Autism Speaks can’t get it right!

As I mentioned previously, for most of us it is obvious that the Apps designed for an iPad are not stand alone therapies! The Ipad is simply a better way for children to access what they were already using. It’s analogous to a typist switching from an IBM Selectric to a computer which is faster and, therefore, much more efficient.

Let’s take a few examples: in the case of the iPad, if a child is accustomed to using icons, and now the
icons are on the iPad instead of velcroed onto a bulky-looking sheet of paper in a three ring binder, the icons may be more effective since they are faster to use; however, the basic idea is the same (with the improvement that the child is not stigmatized by a big, clunky, binder). Another example: if a teacher uses the iPad to have the child trace letters with his finger rather than on a sheet of paper, that is certainly more efficient; the teacher is simply using new technology on tried and tested old techniques. A final example is teaching using flashcards: the iPad may have a bigger, better, more vibrant library of flash cards that can be used to teach labels; however, it is still the science-based, discrete trial training that is being used to work with the child on labels.

The iPad, used properly, is a godsend for children with autism! Autism Speaks shouldn’t worry: we parents are certainly smart enough to figure this one out!

Autism Speaks should pause to listen, for just a moment

Parents have a very difficult time negotiating the world of autism treatments. Everyone is out there offering the latest treatment for the disability of autism. This is nothing new, and until there is actually a cure for autism, various forms of autism snake oil will continue to be sold through the unreliable, age old testimonial.

What’s different now is that the researchers have upped the ante. They now have a well-funded, well-heeled autism organization provide legitimacy to propagate autism treatment myth. The organization I’m referring to is
Autism Speaks.

The last thing we need is for
Autism Speaks, and the scientists who work under their umbrella, to be associated in any way with autism treatment quackery. Today, there was yet another feel good testimonial on the Autism Speaks Official Blog espousing the virtues of Floortime. This testimonial is the product of training from a $15,000 grant provided by Autism Speaks!

I’m floored! Here are researchers,
using a technique with no scientific evidence, receiving big money to train an army of therapists, teachers and respite providers across twenty-two states. Now the first kids to graduate from this program are being presented as success stories.

I’d like
Autism Speaks to listen, for just a moment:

Prior to giving money to train people in a technique that has no scientific evidence, it is incumbent upon
Autism Speaks to support well-designed research into the experimental treatment known as Floortime, to discern whether or not the treatment actually improves the condition of autism as compared to other treatments that are currently considered best practices.

I would like to say this to
Dr. Geraldine Dawson, Chief Science Officer, Autism Speaks: you should know better! It does no service for children with autism, and the parents who advocate for them, for a leading autism organization to misinform about the efficacy of treatments; yet this is exactly what Autism Speaks is doing in this instance. By promoting and propagating quackery, Autism Speaks dilutes its legitimacy. In my view, this is shameful. Autism Speaks has enormous potential to change the lives of children with autism, if only they were to use that power responsibly.

Toilet Training: Autism Speaks Gets Amnesia

Autism Speaks is preparing a toilet-training information kit for parents of children with autism. This is a very good idea because toilet training is one of the first hurdles that a parent of a child with autism experiences either before, or soon after, the diagnosis. Read more...

Autism Votes! Where "Autism Speaks" Shines

The Combating Autism Act is about to expire, and the Autism Speaks Initiative, Autism Votes is strongly behind the move to get Congress to reauthorize the act. The Combating Autism Reauthorization Act (CARA) can be downloaded here. Read more...