EVERY day is autism awareness for me. I made a resolution on January 1 (and I swear, it is the only one I have kept in my entire life) that from then on, I would take very opportunity to raise awareness when it comes to autism. This mainly happens when EJ and I encounter a stranger and they are getting drawn into his web of adorableness (i.e. his curly hair). They might notice after about 5 minutes or so that he is jumping and flapping a lot or that every time they ask a question, his replies are not quite what they would expect of a 4 1/2 year old child. I

It is right about then that I say, "So, do you know anyone with autism?" 9 out of 10 usually say no and that is when I say enthusiastically, "Well, you do now!!". I have raised awareness at restaurants when EJ is busily hiding under the table or unraveling the fork/napkin combo or rearranging the sugar/Splenda packets. I raise awareness every week when he comes to my office at FSU and he sticks his head out of my office door to greet undergraduates who are waiting on the elevator across the hall. I raise awareness at parks when I see other parents eye him curiously as he reverses pronouns and talks a little too loudly to their children. Every day, every chance I get, I make others aware that autism is not always Rainman and that many children with autism and I quote one mother at the park, "look completely normal" (I guess we left the "I have autism" tshirt at home that day).

Therein lies the biggest reason why I raise awareness for children with autism like EJ. He has communication, sensory, social and cognitive issues which usually manifest mildly (depending on the setting), but sometimes he can act or behave so much like a typical child that he is judged by a typical child yardstick. Which makes people think he just needs some good old fashioned discipline or that he is just odd. Or maybe the way I am raising him is odd. Or something. But not autism.

Thinking globally, acting locally- JD in TLH

I like your style of awareness-raising. If everyone with an autistic child followed your lead, there would be much less need for a World Autism Awareness Day. It's much more effective, I think, for people you run into to actually meet an autistic child that for 1,000 people to put puzzle magnets on their cars. (Not that I have a problem with puzzle magnets. Every time I see one, I experience a slightly guilty feeling that I haven't bought one.)

So I'm gonna follow your lead. The next time Billy decides to eat his cheese sandwich at Beef O'Brady's under the table, I will make a point of introducing the puzzled but sweet waitress to her autistic patron :-)

Ajay and I are constantly amazed at the misdirected efforts of various awareness groups. Take, for example, breast cancer. While awareness campaigns and lobbying may have had a place a couple decades ago, it's hard to imagine what they're really accomplishing now. It's terribly politically incorrect to point this out (and I'm a complete chicken/hypocrite- I just wrote a check for another Susan G. Komen walk a friend is doing!), but the fact of the matter is that there are several successful drugs on the market and pharma/biotech companies are literally investing hundreds of millions of dollars in developing more. All the breast cancer fundraisers in the world are a spit in the ocean compared to that. The only real value in "awareness" lies in changing human behavior- whether it's increasing screening/diagnosis rates or helping people relate to those with a particular condition, a la JD's comments.

On the topic of research, there are two organizations who I think "do it right:" the Alliance for Lupus Research and the Cystic Fibrosis Foundation (for full disclosure, I sat on the board of the ALR, but while this is a bit self-congratulatory, I certainly didn't invent their strategy!). Both groups took the approach of funding a ton of basic science research. Basically they started from the perspective that biotech/pharma companies are by far the most likely to develop successful therapies, but until we better understand what the disease is, they remain "uninvestable" areas for industry (their evil investors don't let them spend willy nilly on things they're unlikely to have success at). So nearly all of their funds are given to a board comprised of scientists who distribute them as grants to basic science researchers (in both academia and industry, which is interesting) who submit proposals to study some theory on disease mechanism in the lab. CF knowledge- largely as a function of the simplicity of the disease- progressed much faster and the foundation has evolved to fund very early stage drug development as well. As soon as the infrastructure of the disease landscape was in place, drug companies started investing in therapies targeting the aspects of the disease the researchers had uncovered. Lo and behold, there is a CF drug that's likely to be on the market in a couple years (and the CF Foundation was brilliant- since they funded early stage research at the company, they'll actually get a small royalty on sales of the drug).

The commonality with autism is obviously that we don't know enough about it for companies to invest meaningfully in therapies, so I would argue that similar funding of real basic science research (which, by the way, does not include epidemiology) by a private foundation is the best use of funds. It may be that this isn't a "drugable" disease (or even a "disease" at all), but even the development of non-pharmacologic therapies would be rapidly advanced with more knowledge of what we're dealing with on a cellular level. Maybe what I'm saying is that awareness of the scientific method is what really needs to be advanced. :)

I think that is the most sensible approach to the whole issue of "where do we put funds" that I've heard. I think that's what's missing in a LOT of awareness campaigns: a real strategy. Awareness is all well and good, but awareness of *what* exactly? The existence of the issue? How to treat it? The challenges people face with it? And once we're aware, what is our next step? How can we use this global awareness to make real change? And what should that change look like?

Those are the hard questions, and the autism community seems to have about 41 answers to each one of them. There are so many therapies that promise improvements, if not an outright cure, for autism at the moment AND SO LITTLE SCIENCE to back any of it up! It's so frustrating. And a basic understanding of what autism is is exactly what's missing.

I know so little about what kind of research is going on at the moment. I've read a bit about the work that V.S. Ramachandran has done with the whole mirror neuron theory. And I've read a little bit (as much as my non-science brain could make sense of) about the various genetic theories.

Defining autism is such a political minefield at the moment. As we have discussed before, so much time, energy and money has been wasted on the vaccine nonsense that more credible theories get neither the media coverage nor the funding and attention.

I would really appreciate your letting me know if you hear about any new science that we should look into. It's nice to know that I can get you or Dave to explain the studies to me :-)

April 2nd was <a title="April 2 is World Autism Awareness Day" href="http://personalmoneystore.com/moneyblog/2010/04/02/april-2-world-autism-awareness-day/">World Autism Awareness Day</a>, and in case you missed it – here's a little awareness of the affliction. Autism can represent a wide variety of effects, with the mild (including Asperger's disease and mild forms that can come off as just being awkward) to the extreme, where folks need consistent care and assistance for life, and it takes more than a few payday advances for parents to care for children suffering from the disease. Autism is diagnosable early on, but the reason for the disease remains unknown, though there are several theories, affects males a lot more than females, and occurs in anywhere from 2 to 6 people per 1,000.