Autism Diagnosis: An Intersection of Difficulties

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.


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