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.
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 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.
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).
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:
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:
Autism in the Media: