Our schedule for this post: FIRST disclaimer, THEN soapbox.

Now, I’ll admit right now that I’m no fluffy optimist. I’m not as bitter and blustery as several of my ahem fellow bloggers, but I do have a sarcastic side, I try not to be too corny.

All that being said, I have high hopes for Autism Awareness Month every year. I truly enjoy the people with autism that I know, and, framed simply, I want others to be aware of how cool it can be to really know someone with autism.

ADDITIONAL DISCLAIMER: Statistically speaking, there are probably people with autism out there that I wouldn’t enjoy, and OF COURSE nobody is a joy to be around ALL the time, including me.

So every April, I get a little geeked out thinking about how more people will find about autism…and then the big month comes, and guess what?
1. My google alerts are full of sob stories and fundraiser alerts.
2. I don’t see any more public appreciation than usual (which isn’t much) for any:

cool projects that people with autism are working on

cool stuff that other people do to empower people with autism

kudos about how hard people with autism seem to work, all year round, to make sense of neurotypical rules and behavior, and to cope with a consistently high level of sensory overload.

So, since we are calling dibs on months to squawk about stuff, I would like to declare the month of May: The Empowered Autism Appreciation Month. Send me your celebrations, love stories, moments of hilarity, and victories having to do with autism. We can appreciate them together.

I only have a few autism news updates this time around. Someone email me if I’m missing something big (that doesn’t have to do with Jenny McCarthy).

The federal government is looking for autism research to fund, based on recommendations by the IACC’s 2009 Strategic plan . The proposal includes potential funding for research on adult services, safety of botanical/pharmaceutical interventions, and environmental and genetic epidemiology.Read the proposal…

I usually refrain from endorsing products, and I haven’t tried this one, so I can’t speak to it’s usefulness, or usability. However, I think it’s really cool, theoretically. And about time, too! Proloquo2Go™is a new communication product from AssistiveWare, that brings visual structuring, and communication support to the iphone. Cost: $189 for the software & application (iphone not included). For reference, a Dynavox is $6,000 or more.

Dr. Andrew Wakefield, the doctor who first concluded that autism and the MMR vaccine were linked, was found guilty of over 30 charges by the General Medical Council last week. He has been on trial for more than two years. You can read the Fitness to Practice Panel documents here:

All over the internet, people are spouting reactions. Clearly, I’m a fan of the internet, and opinion spouting, but tonight I am concerned about the larger effects of this extended controversy.

What has the Vaccine Controversy Cost Us?

The vaccine debate is possibly the most divisive quarrel in the greater autism community (meaning people with autism, and their parents, doctors, and general entourage), and it has sapped a lot of our potential strength. I can’t even imagine the total amount of time and money we have spent researching, writing, analyzing, griping, gossiping arguing, blaming, defending, and promoting different sides of this issue. The fact that most of us who participate in this debate are immensely unqualified to speak scientifically about it does not seem to faze us, and, accordingly, the internet is littered with impassioned statements with little to no academic references.

Meanwhile, while we furiously type un-referenced diatribes, our growing community, which most of us agree is under-supported and poorly understood, has to make do without us. When we spend our energy pointing fingers at each other and howling about the idiocy and fraudulent nature of each other’s arguments, we lessen our potential as a united force for good.

I understand that many people feel THEIR vaccine argument just MIGHT be saving incoming children either by keeping them from being vaccinated, or by maintain herd-immunity, and I acknowledge the possibility of this kind of contribution. However, I want to point out that when we non-researchers put our energy towards creating empowered, positive attitudes and programs in our communities (see a list below for ideas), we aren’t gambling with our efforts. We can be reasonably assured that we are contributing positively in a community which can’t afford to waste any energy.

Autism community contributions with a high return rate:

Hire people with autism to work at your business

Create internships/apprenticeships for teens with autism who share your interests

Speak positively to and about people with autism

Share your resources about autism (lend out your books, share successful communication techniques, post your favorite autism websites to your facebook)

Spend relaxed leisure time with people with autism (this one is more for neurotypicals)

I’m a little behind on the autism news, but several significant events have occurred lately that deserve coverage, even if it’s a little belated.

First of all, check out Matt Savage (left)! This kid can play the heck out of the piano!

In late December of 2009, President Obama appointed Ari Ne’eman, founding president of the Autistic Self Advocacy Network (ASAN) to serve as a member of the National Council on Disability. Ne’eman has autism, and is well-known for his neurodiversity beliefs. You can read a nice article about him that was published in Newsweek in May of 2009.
 

The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Tuesday, January 19, 2010 from 9:00 AM – 5:00 PM ET in Bethesda, MD. The purpose of the IACC meeting is to discuss and vote on recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorders Research.
You can watch the meeting online here.
You can see more info here.
 

The Center for Disease Control (CDC) released new autism prevalence statistics from a 2006 surveillance report The CDC now reports that between 1 in 80 and 1 in 240 (average of 1 in 110) children in the United State has an ASD.
 

The Autistic Self Advocacy Network (ASAN) is working on legislation to reduce seclusion and restraints within the schools. The organization is hoping concerned US citizens will be part of a national call-in day next Thursday, January 12st. Read More

 

Caution: this post is just the conclusion to a much longer paper I wrote about the lag between potential autism diagnosis, and actual diagnosis. I realize that the writing style is dry, and less interesting than I would prefer, but what can I say? That’s what they like in grad school these days…

Currently, early recognition and diagnosis of autism is becoming heavily emphasized (Shattuck et al, 2009), as the autism community sees better and better outcomes from early intervention therapy (Dawson, 2008). Experts can diagnosis autism, in most cases, between ages two and three (Myers & Johnson, 2007, Shattuck et al., 2009, Zwaigenbaum et al., 2005), but many children do not actually get diagnosed until age four or five (Mandell, Novak & Zubritsky, 2005, Shattuck, et al., 2009, Wiggins, Baio & Rice, 2006), when they are past the optimal age for beginning therapy (McEachin, Smith, & Lovaas, 1993).

The same discrepancies that plague our nations health care access are reflected in the autism population: disenfranchised people do not visit health care providers as often as their privileged counterparts (Chan, Hart, & Goodman, 2006, Newacheck, Hughes, Hung, Wong, & Stoddard, 2000, Saha, Arbelaez, & Cooper, 2003), and so they receive screening and diagnosis significantly later in life (Mandell, Listerud, Levy, & Pinto-Martin, 2002, Mandell, Novak & Zubritsky, 2005, Mandell & Palmer, 2005).

Due to considerable changes in autism screening practices over the past 10 years (Matson, 2007), health clinics or professionals who might otherwise be in a position to effectively screen for autism are behind the times, and uneducated about current screening tools (Stone, Coonrod, Turner, & Pozdol, 2004). Additionally, when parents who know enough to be concerned at an early age present themselves to a health professional for assistance, even the well-informed health professional has a slim selection of scientific tools to assess a child who is younger than 24 months old(Gray, Tonge, Sweeney, & Einfeld, 2008, Kleinman et al., 2006, Robins, Fein, Barton, & Green, 2001, Swinkles et al., 2006). Whether it is due to ignorance, or the lack of an appropriate tool, many professionals do not use a screening tool at all (Wiggins, Baio & Rice, 2006), even though formal tools are shown to perform better assessments than clinical observation alone (Charman et al., 2005).

Many children are school-aged before they receive an autism diagnosis (Earls & Hay, 2006, Yeargin-Allsopp, 2003). If they have protocols at all, each school district has different protocols regarding autism (Jacobson & Mulnick, 2000), resulting in some children being referred to clinicians for a diagnosis, some children receiving an autism eligibility code without a diagnosis (Yeargin-Allsopp, 2003), and some children’s autism characteristics being overlooked entirely (Bertrand et al., 2001). Funding allocations affect the proportion of autism eligibility in a variety of school districts (Mandell & Palmer, 2005, Palmer, Blanchard, Jaen, & Mandell, 2005).

Although autism professionals can recognize autism at age 2 or 3 (Shattuck et al., 2009, many children do receive a diagnosis until a few years later (Wiggins, Baio & Rice, 2006), which may impact their development potential (Dawson, 2008). In order to identify more people with autism earlier, the AAP has recommended that all children be screened for autism at 18-24 months (AAP, 2006, Myers & Johnson, 2007), and while that recommendation is consistent with the age at which many parents have concerns (Chakrabarti & Fombonne, 2005), the infrastructure to implement this degree of screening is not currently present (Nayes-Grosser, 2007, Stone, Coonrod, Turner, & Pozdol, 2004). Better screening tools, more frequent access to quality health care, and consistent educational practices may help to identify more people with autism, earlier in life. This, in turn, may help more people with autism access independence earlier, and lead happier lives.

References

Autism News in the United States:

The Interagency Autism Coordinating Committee (IACC) is a government group mandated by the Combating Autism Act (CAA, 2006) to make suggestions (and update them annually) for the National Institute of Health’s strategic plan for the support of, and conduct of autism research. Last week, the IACC met in Maryland to discuss the strategic plan for 2010. In yet another example of the contradictory autism information wars, there has been, and continues to be controversy about whether or not the IACC included autism-vaccine-connection research as part of their strategic plan suggestions.

Autism Speaks put out a press release stating that they were “encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research”. The Autism Science Foundation posted this on their blog: “Autism Science Foundation President and Interagency Autism Coordinating Committee member Alison Singer joined her colleagues on the IACC in voting to eliminate references in the autism strategic plan that could imply that vaccines cause autism or that call for additional vaccine research.” Hopefully this confusion will be cleared up at the next IACC meeting on Dec. 11th, 2009.

In San Diego, The Community Coaching Center (CCC) and Daniella deVarney Photography partnered to facilitate an awesome program called Through the Lens of Autism. 90 kids with autism got to learn about photography, and take photos of their community.
Check it out
 

Older but important news: Based on Specialisterne (a company that employs a lot of people with autism as software specialists), Harvard Business School published an article on employing people with autism as specialists in general. Currently a few similar business models have popped up, including Autelligent Laboratories, indicating a trend towards appreciating (financially) the skills that many people with autism possess.

Interesting Autism Studies:

Genes Related to Sex Steroids, Neural Growth, and Social–Emotional Behavior are Associated with Autistic Traits, Empathy, and Asperger Syndrome
 

Clinical and anatomical heterogeneity in autistic spectrum disorder: a structural MRI study. This study is interesting, especially in light of the upcoming decision about whether or not to include Aspergers as a separate diagnosis in the DSM V.

Periodically, I will be writing autism news updates on the site to keep us all as informed as I can about the current autism buzz. I am trying to be factual, so if you notice something that isn’t correct, please contact me and let me know ASAP! I’m not trying to contribute to the embarrassing mass of autism misinformation. Also, if you have news that you think should be added, please send it to me, or comment on this post.

Global Autism News:

In the UK, the Autism bill of 2009 has just passed in parliament, and becomes the Autism Act of 2009. In theory, this act officially commits the Secretary of State for Health to providing a set of best practices for autism services, including diagnostic practices, transition to adulthood practices, and staff training practices. This document must be finished by April 2010.
See the final bill
FAQ

It is possible that the updated Diagnostic and Statistical Manual of Mental Disorders (DSM), due to come out in 2012, will not include Aspergers Syndrome. According to Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan (and part of the team who is updating the autism section of the new DSM), it has been difficult or clinicians to reliably separate Aspergers syndrome from ‘mild autistic disorder’.

The potential fallout from this change could affect the semantics of insurance coverage, service provision, and autism incidence statistics. Plus, Aspies who are proud of their label will have a dilemma too. : )

United States Autism News:

Amy Wetherby has been awarded a total of 2.4 million dollars in National Institutes of Health (NIH) grant money to develop a good ASD screening tool. Wetherby, a researcher at the Florida State University, believes autism can be detected in children 18-24 months old, but is frustrated by the lack of an effective screening tool for children that young.

Artist Stephen Wiltshire drew a huge line drawing from memory, of NYC (which he refers to as his ‘spiritual home’). He flew around over the city in a helicopter for less than an hour, and then busted out this spectacular piece. Oh yeah, he has autism.

Autism in the Media:

Amy Wallace, a writer for Wired magazine wrote an article which reported on the vaccine-autism connection, titled: An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All. The cover of Wired read “vaccines don’t cause autism”, and the kickback was unprecedented. Angry people who think vaccines caused their own, or their child’s autism wrote, called, emailed, and twittered themselves into a righteous frenzy about the article, prompting a follow-up article by James Rainey in the LA Times, called, Childhood vaccines, autism and the dangers of group think.

Ladies and Gentlemen,
This is what I’m talking about!
Isaac Dealey at Autelligent Laboratories is, as I like to say, “Handling His Business“! Autelligent Laboratories is working to create jobs for 40 million (no, that’s not a typo) people with autism, worldwide. Their plan is described much more eloquently on their website, but the basics idea is this: design a reproducible business model, so that people can tailor it to their talents. Recruit autism-specific talent for their company worldwide, using the internet, and then help other business to do the same.

Check out a more in-depth document about AutLabs.

What I like the best about this project is that it is based on the strengths of autism. Mr. Dealey is talking about making money designing software for businesses, using what is awesome about people with autism (often strong analytical thinking, ability to focus, ability to see patterns etc). He wants other people to use AutLabs’ open-sourced business model to design business based on what they love to do. Our great country, and the autism community, has waited too long to capitalize off the strengths of autism! Why not set up a web-based business that doesn’t require a whole lot of politics, schmoozing, and small talk? Great idea, AutLabs.

Mr. Dealey has an Aspergers diagnosis himself, and is unhappy with the unemployment rate for adults with Autism and Aspergers (over 90% in the United States!), and guess what? He’s designed this really cool project to do something about it, not just for him, but other people too! Not that he needs it, but this project, and Isaac himself get an EmpowerAutism 10 out of 10 points.

This cool autism business project is still in the design phase, and could use your input. Please visit their wiki, and contribute ideas, time, or money if you can!

What do you think?

back to Autism Diagnosis: an intersection of difficulties

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