Literacy, Autism and Diversity: In Search of Profiles to Inform Practice
by Chris Wenz, Ph.D.
Research Scientist
Landmark College Institute for Research and Training
Students with autism are more likely than ever to be learning in inclusive classrooms; however, we are just beginning to understand the academic needs of these students and still have much to learn about how to serve all students who struggle to learn to read. Bear with me through a metaphor I find helpful in thinking through these challenges.
Imagine shopping for a plant to brighten some spot in your home. You have some sense of the conditions in which the plant will live, so when you arrive at your local Garden Center you begin reading the labels that accompany each plant. However, the labels simply state, “All plants need air, water, nutrients and sunlight.” It’s not an untrue statement, but not a helpful piece of advice when we consider that both a cactus and a water lily are plants. Yet, the plant label would be similarly unhelpful if it read, “Each plant is unique and requires careful attention in order to determine its specific needs.” The reality, of course, is that through experience and research we have developed useful ways of describing and categorizing plants based on their needs and tendencies. At the same time we recognize that these categories can not capture all of a plant’s eccentricities or account for the needs that will arise based on the environment in which it lives and grows..jpg)
It is precisely this “happy medium” that we currently lack in our understanding of reading differences and difficulties in all students. This is where the concept of reading profiles becomes useful, and the place from which my current research on adolescents with autism began.
What’s a reading profile anyway?
A reading profile is a relatively simple idea: every reader has variances among their reading skills and behaviors and thus every reader has a set of strengths and weaknesses (Valencia, 2011). It’s an idea that has a, “No, duh!” quality to it, but it is an idea at odds with how we typically provide reading supports to struggling readers. The prevailing approach too often assumes (incorrectly) that there is a single profile of reading difficulty. As a result all striving readers, regardless of their profile, receive the same intervention. To extend our plant metaphor, it’s as if we assume that a good watering will solve all the problems plants may encounter. Watering is a reasonable guess as a remedy, but drowning a cactus is one possible result of adopting this one-size-fits all approach. So, although the instruction and interventions implemented in schools are selected based on the evidence of their effectiveness, “effective instruction” is a relative term. Instruction or intervention well-matched to a student’s particular needs can tremendously improve reading outcomes. But time spent receiving instruction that does not address those needs is not just time wasted and can in fact have a negative impact on reading skills (e.g., Phillips et al.,2007).
At the same time, we simply do not have the resources to design entirely individual reading instruction for every striving reader. Luckily, we do have a strong sense of profiles of reading difficulty that emerge at different developmental stages (e.g. Spear-Swerling, 2015). Where we need to be become more sophisticated is in recognizing these profiles in individual students and differentiating our instruction accordingly.
What does this have to do with autism?
Beyond the difficulty of matching students with instruction described above, there are some unique challenges in understanding how to support students with autism as they learn the reading skills that are essential in the classroom and beyond.
Challenge 1: Diversity
Just as we have learned that there are a variety of reading profiles among striving readers, there is not a single reading profile associated with autism (Humer & Mann, 2010; Williamson et al, 2012; Nation & Norbury, 2011; McIntyre et al, 2017). These studies render broad generalizations about “what students with autism need…” meaningless. Years ago, Dr. Stephen Shore captured this diversity perfectly with his adage, “if you’ve met one person with autism, you’ve met one person with autism.” Based on my own experience as an educator and researcher, Shore’s words ring true. Yet, this is entirely unhelpful advice to give anyone seeking to understand autism or how to support individual students (just like the plant label that reads, “each plant is unique…”).
Therefore, the goal of my current research is to take a first step towards the “happy medium” described above and identify patterns in the reading profiles of 152 adolescents with autism. In these data, I identified three distinct groups each with a different pattern of relationships between reading comprehension, intelligence, executive functioning and social functioning. These results align with other attempts to identify profiles and suggest that our instruction or intervention needs to account for the patterns of strengths and weaknesses that are found in assessment data.
Challenge 2: Lack of a research base on instruction.
The strides we have made in understanding differences among people with autism is a vast improvement over the use of the labels “high-functioning” and “low-functioning,” a practice that is not only harmful to those who must wear those labels, but unhelpful in informing instruction. As we get closer to having helpful ways to conceptualize the diversity among students with autism through the identification of reading profiles, it will be essential that we can understand how these profiles should inform instruction. This process is made more difficult by the lack of knowledge about how effective our existing instructional models are for students with autism. Much of the instruction provided in schools is based on the work of the National Reading Panel (NRP) which was tasked with making recommendations on the elements of effective reading instruction. But of the thousands of studies summarized by the NRP, only one explicitly included students with autism (2000). Thus, some researchers (including this researcher) has raised the possibility that the instruction we believe is effective for neurotypical readers is inappropriate for some students with autism (Fleury et al, 2014). Further, there is only a small set of studies that have report on the effects of reading instruction and interventions for students with autism. A frequently cited 2009 literature review on this subject summarized only 11 studies with a total of 61 participants. To my knowledge there have not been any studies that have tested interventions or instruction for students with ASD that were informed by a reading profile (Whalon et al, 2009).
Of course, it is entirely possible that the needs and profiles of readers with autism don’t differ greatly from those of neurotypical readers; the problem is that we don’t know for sure and there’s lots of work to do before we know for sure.
Challenge 3: Link to the cognitive features of autism
Several recent studies have shown a relationship between the social differences associated with autism and reading (Ricketts et al, 2013; Asberg et al, 2010; McIntyre, 2017). In my data, a measure of social cognition was a significant predictor of reading comprehension, even after controlling for decoding, fluency, and language comprehension; in two of the three groups I identified in these data, reading comprehension was more highly correlated with social cognition than with verbal comprehension of language. In other words: as difficulty with understanding the social world went up, reading comprehension went down. Similarly, for one group, scores on a standardized measure of executive function were more highly correlated with reading comprehension than verbal comprehension. While my results can’t speak to causal relationships, the results and previous studies clearly indicate that there is a relationship between the cognitive features associated with autism and reading comprehension. As of yet, we don’t fully understand these relationships or how to account for them in instruction and intervention.
It’s not all doom and gloom.
I don’t want the message of this article to be, “WE KNOW NOTHING, THAT’S BAD AND WE SHOULD PANIC.” So, I offer two silver linings. First, the fact that educators and researchers are wrestling these questions about reading and autism is a good sign: a sign that we are (slowly) finding ways to not just include students with autism in schools, but think carefully about how to best meet their educational needs. Second, I am encouraged by initial evidence that social skills and literacy skills seem to develop reciprocally in students with autism — my hope is that we can design instruction that recognizes that these two domains are intimately connected for ALL students, not just students with autism. So, while we may be far from knowing all that we need to know, I try to remind myself that we haven’t totally figured out plants yet, even after 20,000 years of agriculture. For now, we’ll have to be satisfied that we’re making progress on understanding how to help all readers succeed.
References
Åsberg, J., Kopp, S., Berg-Kelly, K., & Gillberg, C. (2010). Reading comprehension, word decoding and spelling in girls with autism spectrum disorders (ASD) or attention-deficit/hyperactivity disorder (AD/HD): Performance and predictors. International Journal of Language & Communication Disorders, 45(1), 61-71.
Fleury, V. P., Hedges, S., Hume, K., Browder, D. M., Thompson, J. L., Fallin, K., ... & Vaughn, S. (2014). Addressing the academic needs of adolescents with autism spectrum disorder in secondary education. Remedial and Special Education, 35(2), 68-79.
Huemer, S. V., & Mann, V. (2010). A comprehensive profile of decoding and comprehension in autism spectrum disorders. Journal of Autism and Developmental Disorders, 40(4), 485-493.
McIntyre, N. S., Solari, E. J., Grimm, R. P., Lerro, L. E., Gonzales, J. E., & Mundy, P. C. (2017). A comprehensive examination of reading heterogeneity in students with high functioning Autism: Distinct reading profiles and their relation to Autism Symptom Severity. Journal of autism and developmental disorders, 47(4), 1086-1101.
National Reading Panel (US), National Institute of Child Health, & Human Development (US). (2000). Report of the national reading panel: Teaching children to read: An evidence-based assessment of the scientific research literature on reading and its implications for reading instruction: Reports of the subgroups. National Institute of Child Health and Human Development, National Institutes of Health.
Norbury, C., & Nation, K. (2011). Understanding variability in reading comprehension in adolescents with autism spectrum disorders: Interactions with language status and decoding skill. Scientific Studies of Reading, 15(3), 191-210.
Phillips, L. M., Norris, S. P., & Steffler, D. J. (2007). Potential risks to reading posed by high-dose phonics. Journal of Applied Research on Learning, 1(1), 1-18.
Ricketts, J., Jones, C. R., Happé, F., & Charman, T. (2013). Reading comprehension in autism spectrum disorders: The role of oral language and social functioning. Journal of autism and developmental disorders, 43(4), 807-816.
Spear-Swerling, L. (2015). The power of RTI and reading profiles: A blueprint for solving reading problems. Baltimore: Paul H. Brookes Publishing Company.
Valencia, S.W. (2011). Reader profiles and reading disabilities. In R.L. Allington & A. McGill-Franzen (Eds.), Handbook of reading disabilities research. Mahwah, NJ: Erlbaum.
Whalon, K. J., Al Otaiba, S., & Delano, M. E. (2009). Evidence-based reading instruction for individuals with autism spectrum disorders. Focus on autism and other developmental disabilities, 24(1), 3-16.
Williamson, P., Carnahan, C. R., & Jacobs, J. A. (2012). Reading comprehension profiles of high-functioning students on the autism spectrum: A grounded theory. Exceptional children, 78(4), 449-469.