Today I just want to say that I’ve had a great time this week in the Autism Community Center activity groups. It was really fun to record videos of kids having fun in the gym, and to hear people talk about their work in writing & illustrating. As you can see from the pictures, I’m not the only one having fun!

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:

Today we started our writing and illustrating group for the Autism Community Center of Asheville! This was taken at the end of class, when people were explaining their art or writing. You can see more videos from the Activity Groups on the Autism Community Center website.

I had so much at this group today. It was the first day, so everyone was a little anxious, but once we got going it was awesome.

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!

As you may know, I work for Dragonfly Forest, a free camp for kids who have autism. This year, we are presenting at several conferences about campers with autism, and making a typical camp setting more accessible for kids with autism. Here is one of my main points about the difference between a camper with autism and a neurotypical campers.

Self Referencing vs Social Referencing

You and I and other neurotypical people are constantly social-referencing. That means we are using other people’s behavior to guide our own behavior. In a group, we look at other people to see what they are doing. If everyone heads over to look out the window, we sort of want to do that too.

We study each other’s tone of voice and facial expressions closely, and use that information as a social cue for own behavior. In fact, we even mirror other peoples facial expressions when they speak to us (imagine a friend telling you they got some sad news, your mouth will turn down, and your eyes get soft, almost as if you had received the sad news yourself). We ‘instinctively’ know when a class or meeting is almost over because everyone starts rustling their papers and gathering their bags. In contrast, people with autism are often self-referencing, which means they are checking in on themselves, and using their own feelings to guide their behavior instead of using others behavior to guide them.

Examples of social cues (things that you know how to interpret even though no one ever explained them to you):

Self-referencing (and missing social cues) can lead a camper with autism to

You can help a camper who is self-referencing by:

I have resigned from my position at the Autism Society of NC. Honestly, I really loved my job there, even though it was stressful and frustrating at times. I really appreciated getting to work closely with families, and see so many different way of raising a child with autism. There really is no one way to do it, just like there is no one way to raise any other kid.

Anyway, I have no regrets about resigning from a job I loved because I get to do THIS instead! I am going to run activity groups and parent seminars for the new Autism Community Center of Asheville!

I’ve been complaining for years that there are no recreation/leisure activities for people on the spectrum to participate in. I mean, people on the spectrum who can access the same activities as neurotypicals are doing that, of course, but some people do not enjoy those activities, or need more structure and explanation than many of those groups offer. I decided that I should just stop complaining, and use my summer camp director experience to create some great activity groups that are high-interest, low-anxiety and focus on having fun. Enter the new Autism Community Center, which will be located at Westwood Baptist Church in west Asheville.

We are going to begin by running activity groups (read more about them) and a monthly Parent’s Night Out. Eventually, the Autism Community Center will have an afterschool program, counseling services, academic tutors, and parent workshops. Check out the website, and tell us what you think!

photo by Mike Belleme

I can’t really believe that the year has gone by this fast, but apparently everyone was right, and adulthood, or, in my case, “adulthood”, is flying by. This is third year that Dragonfly Forest will have an overnight camp for kids with autism! It seems like it was just yesterday that I was agonizing over the details of the program design, and explaining why the schedule had to be both rigid and flexible at the same time.

Anyway, enough reminiscing.

The application for Autism Camp at Dragonfly Forest is officially open for 2010!

This year, campers can apply for an overnight session or a day camp session (see the website for session dates). We hire adults (18 plus) with autism to work as counselors or program staff, and we have a counselor-in-training program for teens on the spectrum.

I think I’ve said this before, but camp is the most fun I’ve ever had. Come check us out and see why I’m as excited as a cat in a mouse store!

Read more about Dragonfly Forest
Visit the Website for session dates, and the application
See a video of me talking about camp

I read a post over on Autism Learning Felt about an interview with Dan Burns (author of Saving Ben) and felt inspired by a line in the article about self advocacy. QUICK DISCLAIMER: I have not read Saving Ben, nor met Ben, so I cannot recommend or dis-recommend the book. Burns’ son, Ben, is 22 and has ‘aged out’ of school and government community supports. Burns writes in the interview about his wish that he, and by proxy, Ben had depended less on the school system, and focused more self-reliance and self-advocacy. I couldn’t agree more!

My definition of self-advocacy: a skill-set encompassing knowing what you want, communicating what you want, planning for yourself, and refusing things you don’t want. If kids (with and without autism) want to be able to make choices about their adulthood, they have to know how to do these things. In fact, these skills are part of the ‘hidden curriculum’ aka the ‘social curriculum’ of high school!

So, is it a mystery that kids with autism miss the hint on these highly-valued, but rarely explained skills? No.

It might be nice if schools taught these skills, but they don’t. Plus, kids are only in school for about 35 hours a week and they are at home for 133 hours per week. So it’s on us!

How we can learn to be better self-advocates? How can we break a skill like ‘knowing what you want’ into bite-size, practice-able bits?

The same way we teach everything else! Explain it, write about it, cartoon about it, talk about it, praise it, model it and narrate, and most of all, don’t give up on someone just because they ‘age out’ of school. Do neurotypical people stop learning stuff after high school? I sure hope not.

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

Reason #333 that Dragonfly Forest is the best: They let me design a free overnight autism camp program for them outside of Philadelphia! This video is me (slightly awkwardly) talking about the program. You can read more about Dragonfly Forest, and why I designed it the way I did here.