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.

Autism News in the United States:

Interesting Autism Studies:

Today’s post is for parents of children with autism, people who work with kids in the autism field, and anyone else who has to walk a fine line between pushing boundaries to teach skills, and making room for people to be just be who they are.

I’ll start by saying that I do not have a child with autism, so I can’t relate to the full scope of your situation. However, most of my kid-related autism jobs involve working closely with families, and I’ve spent significant time with about 50 families. What does ‘significant time’ mean? That means I’m that overly-chipper girl that shows up in the kitchen when you’re still groggy in the morning to help make a ‘morning routine’ schedule. It means I’m the girl who knows the details of the potty struggles. I have had to frantically search the yard with a flashlight to find Thomas the Train, and I cringe when strangers act like autism meltdowns=bad parenting. I know that most parents of a child with autism are sleep deprived, financially concerned, and in hot pursuit of reliable information.

I’m saying all this because I generally think that advice from people who don’t know what you’re going through is condescending, and relatively useless…and there is no getting around it: what I’m about to say can only be categorized as unsolicited advice.

The only thing I can say in my defense is that I made these lists for myself, for when I forget the important stuff about teaching a kid (with or without autism) to be a grown up.

Enough disclaiming. Here it is. Two short, sweet, lists that bring me back to basics:

Do:

1. Address anxiety directly. I don’t always know what makes other people anxious, but I can make some good guesses: transitions, new stuff, and confusing expectations. What should I do for myself when I’m anxious about unavoidable stuff? I should prepare for it, usually in a visual format (think planner, journal, diary or sketchbook). I can prepare kids for this stuff too. When I start dropping the ball on setting clear expectations, complete with transition warnings, everything falls apart.

2. Remember sensory sensitivity. Again, I don’t always know what icks people out, but I can make some good guesses: too much light or noise, crowds, itchy clothes, and too much to look at. I can adjust my own perspective, based on the environment, and I should.

3. Sit back and appreciate the true character of the kid under your care. This one is so important to me, that I wrote a whole post just on this topic.

Don’t:

1. Nitpick. Figure out the one, or occasionally two, most important things for the next three hours, and hush up about everything else. It’s tempting to over-correct, or to feel embarrassed about someone else’s manners and critique them, but 100% of Empower Autism authors agree, it’s a bad idea to nitpick. In the long run, the child will suffer from insecurity, and I will suffer from frazzled nitpicker syndrome (a condition immediately obvious to those around me).

2. Talk too much. For Pete’s sake, I’ve been doing this for years! Why can’t I just remember to give a short verbal explanation, and back it up with visuals? Instead I sometimes find myself blathering on as if I was making sense.

On the occasions that I can keep all of these things in mind, I have more fun, and so does everyone around me. As simple as they sound, these four things are definitely not easy. However, I believe that each one is a concrete way to be respectful of autism.

What are your Autism ‘do’s and don’ts’?

This is part of a paper I wrote about Early Intervention. It’s a little long, and a little wordy for the casual internet reader, but, every once in awhile, it’s important to nerd out and get intellectual and precise. There is a link to my citations at the end.

Here we go.

In the United States, the idea of ‘early intervention’ (EI) arose in the late 1950’s, and early 1960’s amidst the fallout of Brown vs. the Board of Education. At the time, many people believed humans inherited their intelligence genetically, and that differences in standardized scores could be explained by race or heritage (Ramey & Ramey, 1998). Against this backdrop of inherited intelligence, several learning theorists began to focus their research on the significance of the first few years of life (Harlow, 1958, Hunt, 1961). Additionally, a study done by Skeels and Dye (both named Harold) influenced the psychological community about intelligence development in children with mental retardation, and the potential intelligence-development of all children (Skeels & Dye, 1939).

As the idea of a mutable, developable intelligence grew, several researches performed pivotal, successful, randomized early intervention trials on young children (Caldwell, 1973), which provided the basis for the federally funded Head Start program in the United States (Zigler & Muenchow 1992). Incidentally, Sputnik, the Russian satellite launched in 1957, had just trumped the United States in the technological innovation category, and it is rumored that programs like Head Start were more willingly funded in the hopes of creating smarter students, more quickly (Ramey & Ramey, 1998).

The Head Start program set the precedent for other government funded interventions, including early intervention programs for children with disabilities (Ramey & Ramey, 1998). Each state is now required to provide early intervention for those who qualify using, “services which are designed to meet the developmental needs of an infant or toddler with a disability, as identified by the individualized family service plan (IFSP) team, in any one or more of the following areas: physical development, cognitive development, communication development, social or emotional development, or adaptive development “(IDEA, 2004).

For children with autism, early intervention began in the 1980’s after Eric Schopler revealed that outcomes for children on the spectrum could be improved through direct teaching (Schopler, 1987). Researchers then studied outcomes for younger children, and found that, with proper techniques, many children who receive early intervention services make measurable developmental gains (Bryson, Rogers, & Fombonn 2003, Dawson, 2008). Early intervention is now considered a best-practice in the autism field (Woods & Wetherby, 2003, Stahmer, & Aarons, 2009), and each state is mandated though the Individuals with Disabilities Education Improvement Act (IDEA) to provide free early intervention services (IDEA, 2004). However, the precise method by which these services are presented differs throughout the nation (Odom, & Wolery 2003).

Although each early intervention service may feature a different array of treatments, the most effective early intervention programs for children with autism are behaviorally-based (Dawson, 2008, Sallows & Graupner, 2005), family-oriented (Schreibman, 2000, Odom & Wolery, 2003), focused on joint attention and language-learning (Kasari, Paparella, Freeman, & Jahromi, 2008) , and engage the child for at least 25 hours per week (Cohen, Amerine-Dickens, & Smith, 2006, National Research Council, 2001).

Read More…..

Look at my Citations

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:

United States Autism News:

Autism in the Media:

A few weeks ago, I met with the Interpretive Association at the Cradle of Forestry (I’m working with them to make an autism-friendly adventure trail in Brevard!), and had a pleasant surprise. I had just pulled out my soapbox (which is never far from my side), in order to drone on about how to set up a successful autism program, when this quiet intern who I hadn’t met before stops me and says,

“Before we begin, I just want to say that I have Aspergers Syndrome.”

Sweet! My work here just got 500% easier.

Let me explain. This is what I would have soapboxed about:

A. People with autism don’t need the fun ‘toned-down’ for them. As a group, they don’t need easier games, flatter terrain, or simplistic versions. I have never come across an activity that people with autism just cannot do, because of their autism. Sometimes people with autism need more thorough explanations (often in a visual format) about what to do, but that doesn’t mean they should have to play the boring game, or do the undemanding activity. In fact, just like myself and other neurotypicals, people on the spectrum get squirrelly and/or tune-out when they’re bored.

B. We all need more thorough explanations sometimes (often in a visual format). How many of us send out meeting agendas (or wish we would) before we have meetings, so that the whole meeting knows what to expect? How many of us have travelled to a place where we don’t speak the language, and wished we could access a more thorough explanation, in a format we could understand?

C. As a group (with some exceptions), people with autism process information more easily when it is written down, or in a picture format if they do not read. Using visual explanations/expectations gives people with autism more access to the fun (read: life). It really doesn’t have to take a boatload of effort for our parks, museums, restaurants, and bars (yes! People with autism drink too!) to be more accessible to more people on the autism spectrum.

But I didn’t have to say all that, because this intern was there, who they clearly knew and respected. Nobody in the meeting was about to look this kid in the face and suggest that we set up even slightly dumbed –down adventures, or that we ‘protect the autism population’ by making the games too safe (read: boring). Kudos to the Cradle of Forestry for hiring someone on the autism spectrum, and for respecting that person’s expertise (in forestry and in autism).

Blue Ridge Bags and More is a small business, owned by the Autism Society of North Carolina, which employs adults with autism. As part of my job at the Autism Society, I am the official director of Blue Ridge Bags, which is how I know that we need some serious help! See, we have a really cool business, that is actually useful for folks (with and without autism), but nobody knows about us!

We have two parts to our business, and sadly, neither of them is making any money, so I’d like to appeal to you, dear readers, to help me spread the word about Blue Ridge Bags, in the hopes that we can boost sales.

What We Do at Blue Ridge Bags

Our adults with autism assemble TEACCH Home Teaching Kits, which are actually pretty sweet. I have seen a lot of gimmicky autism products in my 10 years in the field, and I can safely say that Home Teaching Kits are useful. They consist of a collection of tasks for a person with autism to do (usually sitting at a table), and an instructional video of how to run the tasks as a parent or helper. The coolest part about them is that parents or helpers who use Home Teaching Kits will actually learn to run any kind of task, and possibly invent their own tasks.

The people with autism who work for us also produce art, which we heat transfer onto canvas bags, mouse pads, cards etc. This part is so fun for all of us. We get to set up environments that are inspiring to the artists (nice lighting, spinney things, photos of their favorite stuff on the walls), and offer a variety of supplies, and then see what happens. Each artist decides if they want to donate their art to the business, or if they want a percentage of profit.

How You Can Help

Right now, we employ people with autism who have job coaches (publicly funded), who help them manage their time, take breaks when they need to, and organize their workload. Our accounting and marketing is done out of the state office of the Autism Society of NC, but I would like to hire people on the spectrum to do those jobs for our business. In fact, I would prefer that someone with autism ran the business, but we don’t have money to pay for any of that. SO. If you would like to buy teaching kits, or art, NOW IS THE TIME! If you have any great ideas for helping Blue Ridge Bags, please be in touch!

In order to increase our revenue, we are also offering our services in bulk mailings, or other such office-type tasks. Please email me svanmeerten@autismsociety-nc.org!

I met Zachary about 6 years ago, when his mom called me to tutor him in writing. Tutoring worked out well, so his mom and I designed a homeschooling program, and Zac and I worked together at libraries all over town for a few years. Then, we got sick of hanging out with each other all day, and decided to find him some fresh tutors, who he worked with a few years. Nowadays, we are friends, and we hang out about once a week, talk about his writing, and anything else that interests us. Recently, Zac let me interview him about his life.

I am so proud of Zac’s story, and the adult that he is growing up to be. Honestly, Zac works harder at his entire day than a lot people do at their job. It is not easy for him to stay organized, communicate what he needs to say, and to get what he wants in general.

My favorite part about our educational journey together has been learning about Zac’s sense of humor. In the beginning, we didn’t joke, and I didn’t know anything about his internal life, but after about a year, he started voicing observations and opinions which revealed his perceptive mind, and his wonderful mix of potty humor and slightly dry sarcasm. Since I am somewhat sarcastic myself (my friends are rolling their eyes right now), this new medium for interacting really improved our friendship.

This interview was even more fun than I expected it be because it started Zac and I down memory lane for a week or two. Since Zac is not a fan of surprising probing questions, I emailed him a list of stuff I was going to ask him about a week ahead of time. Then we met and talked about his responses.

We had a great conversation about all his collections over the years such as string, car parts, toy planes, and, of course, pens. Zac had, according to him, “enough pens to last a lifetime..well… that was back in 1999…maybe they would last a lifetime now that we have iphones and nobody even uses pens anymore…”! We chuckled over our trip to Washington DC, which was the setting for one of the few times I lost my temper with him (he wouldn’t stop munching potato chips and crinkling the bag at 2am in the dark!)

We also had an interesting conversation about some habits that Zac said he’s glad he doesn’t do anymore, like twisting his hair, and playing with a mole on his neck. When he told me this, I asked him why he was glad, and he shrugged and said he thought he looked like a weirdo. We both love that word, so I grinned, but pursued the topic:

Sylvia: Why do you think you did that stuff more in the past?
Zac: I don’t know…Because I was anxious….and it was just a habit.

Sylvia: When did you decide that you looked like a weirdo when you did that stuff?
Zac: I don’t know
Sylvia: …Well I don’t care if you do it. I mean, I twist my hair and wiggle my feet. It seems like everyone does something like that when they are zoning out, or anxious.
Zac: Yeah, I noticed that. I mean, what’s the big deal?

Sylvia: Well, how did you stop twisting your hair and doing the mole thing?
Zac: I don’t know…I guess I’m just not anxious all the time anymore. And when I am anxious, like at camp (Zac was a counselor in training at Dragonfly Forest) I don’t allow myself to do it.

Sylvia: Well everyone does little habits when they are anxious, it’s kind of dumb that some are considered acceptable, and some are not.
Zac: Yeah.