A pediatrician’s role in dyslexia: Where theory meets practice
A pediatrician in Colorado attempts to tackle the way literacy is taught so that his daughter—and others—who have dyslexia can get the help they need.
Recent articles and position statements have been calling for pediatricians to view literacy as a developmental domain and to participate in screening for future literacy concerns as early as preschool age.1-4 As a pediatrician, I agree wholeheartedly with one article’s statement that “The development of reading proficiency in childhood is a public health issue.”1 There is robust evidence linking lack of reading proficiency with school failure, negative impact on meaningful employment, increased risk of involvement in the criminal justice and welfare systems, as well as mental health consequences of reduced self-esteem, anxiety, and depression. As pediatricians we should be aware of and attempt to modify all of these negative outcomes by helping to identify risk factors for future reading disabilities and referring our struggling readers for further evaluation and remediation if available.
Yet, is it really that simple? To help answer this question I would like to point out existing barriers that make executing these recent recommendations difficult if not near impossible. My perspective is based on my experiences as a community pediatrician who currently cares for mostly low-income Medicaid patients, many of whom come from non-English speaking households, as well as from my experience being the parent of a now 10-year-old daughter with dyslexia. As a disclaimer, this perspective is based on the educational landscape in the state of Colorado where I live and may not be representative of other educational and health care systems.
The International Dyslexia Association defines dyslexia as “a specific learning disability that is…characterized by difficulties with accurate and/or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction.”5 Because learning to read requires explicit instruction, identification of such a difficulty in word level reading typically cannot occur until after the child receives formal instruction starting in kindergarten. Yet, as noted in a recent article on dyslexia, “Even after formal instruction begins, it takes some time for individual differences in word reading ability to clearly emerge.”6
Perhaps this is the reason why the diagnosis of dyslexia typically does not happen until the struggling reader is in second grade or later when the word level reading gap is well established and negative consequences are already underway.6,7 This leads to what is called the dyslexia paradox which speaks to the greater effectiveness of word level reading interventions when administered in kindergarten and first grade compared to the later grades when the diagnosis is typically made.7 Early identification therefore is crucial, which is why the authors of these recent articles exhort that I, as a pediatrician, should be screening my pre-k and kindergarten patients, but how?
To date I am unaware of a gold standard for screening preschool and kindergarten aged patients quickly and effectively during an office visit. Recent studies acknowledge that available screenings for this age are not scientifically validated or reliable.1 For this age group a pediatrician is better served to look for risk factors that may consist of family history of reading or spelling problems in the parents as well as history in the child of speech language delay and difficulties in pre-literacy skills of rhyming and learning letter names and sounds (as found in a propagated dyslexia screener by Hugh Catts at https://reacheveryreader.gse.harvard.edu). Presence of these risk factors should raise concern about future literacy struggles yet do not definitively say that the child has dyslexia. For children aged 6 years and older, screeners such as the Colorado Learning Disabilities Questionnaire (CLDQ)8,9 have been validated yet still come with the caveat that it would not be “appropriate for clinicians to use the CLDQ in isolation to make categorical diagnostic or treatment decisions regarding a specific individual.”9 Moreover, studies correctly point out the limitations that screeners may face with respect to sensitivity, specificity, and the inherent risk of over identifying early typical readers who just need more time.6
My personal experience with the dyslexia paradox comes as a father of a dyslexic child. Our 10-year-old daughter was first pulled out for reading intervention in the first grade. Despite my pediatric training, I was ill-equipped to understand and evaluate what screening and interventions the school was providing her, and I trusted that the school would teach her how to read. By the middle of second grade, after 18 months of intervention without improvement, my pediatrician spidey-sense told me it was time to get her privately tested. She seemed to be on the wait to fail trajectory which occurs when “children at risk for dyslexia have to experience considerable failure before receiving appropriate intervention.”7 Wait to fail also represents a criticism of a failed multi-tiered system of supports (MTSS)10 where a dyslexic child experiences considerable failure because the applied Tier 1, Tier 2, or Tier 3 intervention does not meet their word level reading needs.6
The results of my daughter’s private testing revealed what I knew in my gut all along, she has dyslexia. We brought the 13-page evaluation to our school with lists of accommodations and recommended intervention expecting that all would now be fine. It wasn’t. The intervention provided her was ineffective (as it had been prior) and her teachers could not seem to accept that she had dyslexia. Not even an Individualized Education Plan (IEP) could grant us recommended modifications for her.
It was not until I listened to the eye-opening documentaries of Emily Hanford from American Public Media11-14 that the light bulb went on as to why her school was reacting this way. Many years ago, education abandoned the teaching of phonics for whole language and balanced literacy, which teaches our children to guess at words rather than decode them. What all children need, especially struggling readers, is systematic and explicit phonics that is based on the science of reading. Yet to my dismay, many teacher preparation programs still do not teach the science of reading. In fact, in Colorado, the largest teacher prep program was cited again by the State Board of Education for not teaching the science of reading to teachers in training.15 Perhaps this is why in 2019, state testing showed that only 41% of Colorado third graders were reading at grade level.16 Another likely reason for this failing score is because many Colorado elementary schools are not using reading curriculum approved by the Colorado Department of Education (CDE).17,18
What my dyslexic daughter needed was Structured Literacy, which can be found in the explicit multi-sensory scope and sequence approach of programs such as the Orton-Gillingham (OG) method. This was not available in her classroom, so we paid privately for twice weekly OG tutoring and moved her to a public charter school who used an approved CDE reading curriculum and required all K-3 teachers to be trained in Structured Literacy. The result has been life changing for my daughter’s mental health and reading proficiency.
However, I wish I can say that my low-income pediatric patients who are struggling readers and who are experiencing the behavioral and mental health consequences of school failure have had the same experience. Similar to my daughter’s wait to fail experience, the school may proceed slowly with MTTS that is not evidence based, relying on literacy assessment tools such as iReady19 and Istation20 that do not always provide important data on word level reading and oral reading fluency. One might think that such a response to intervention assessments are the domain of the school. However, a recent medical journal article mentioned that pediatricians should become adept at interpreting and responding to these educational assessments and interventions.1 I believe this is out of the scope of a pediatrician’s practice and to circumvent this, I have relied on professional courtesy of qualified educational neuropsychologists and speech-language pathologists to interpret these for me.
For my patients who do have IEPs for their specific learning disability, their parents are typically not aware of the type of intervention the child receives or whether the school’s reading curriculum is supported by the science of reading. Even in the rare case I have been able to secure grant funding for a private evaluation that confirms dyslexia, the child’s school usually does not have qualified staff trained in Structured Literacy to remediate it. As the child’s pediatrician, there are few if any outside referral options for Structured Literacy reading intervention as not all speech language pathologists have received additional training in Structured Literacy nor do insurance payers typically reimburse reading intervention.
It is heartbreaking for me to see my patients year after year for their well-child exam and not know how to help them overcome all of these system barriers that prevent them from obtaining grade-level reading proficiency. Although privately funded programs like the Promise Project21 would be wonderful to have locally to provide free to low-cost identification and remediation for all children with significant reading deficiencies, parents and pediatricians must continue to advocate at the local and state level for continued educational reforms in teacher preparation programs and science-based reading curricula.
Clinically, pediatricians can attempt to screen their native English-speaking patients aged 6 years and older with literacy concerns with the validated online CLDQ-R screener8 during office visits. Additionally, they can equip parents with tools on how to assess what literacy block curricula the school is using so that they can more effectively advocate for their child’s needs as well as hold the school more accountable for compliance with evidence-based literacy instruction and intervention. One helpful tool is the “Literacy Dialogue Tool for Parents/Caregivers” produced by the Colorado statewide dyslexia parent advocacy group Colorado Kids Identified with Dyslexia in partnership with an educational consulting firm. Links to this tool as well as description of how it can be utilized by parents can be found in the referenced Chalkbeat article by Ann Schimke.22 As best as they are able, pediatricians should also attempt to educate themselves and parents of struggling readers on special education law with respect to the Individuals with Disabilities Education Act and section 1400(D)(1)(A) that defines access to a “free and appropriate education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living.”23 One reputable special education advocacy website is wrightslaw.com.
It cannot be overemphasized how effective grass roots advocacy and public attention can have on how school districts teach K-3 literacy. Just recently, thanks to successive articles on the discredited curriculum used by Colorado’s second largest school district24,25 (the district that had failed my daughter), district management recently announced that they will present a new literacy instruction plan to CDE that aligns with the board’s approved programs. Successes like this that push schools and school districts toward teaching the science of reading are within reach of parent and pediatric advocacy groups.
Finally, pediatricians also need to advocate for state legislation that requires insurance payers to cover evaluations as well as remediation for children with dyslexia given the preponderance of medical evidence of its neurobiological origin. Insurance coverage that provides access to early identification and remediation of dyslexia could mitigate the commonly associated physical and mental health consequences of stress, anxiety, depression, and suicide that later on results in great personal and economic costs.
References
1. Sanfilippo J, Ness M, Petscher Y, Rappaport L, Zuckerman B, Gaab N. Reintroducing Dyslexia: Early Identification and Implications for Pediatric Practice. Pediatrics. 2020;146(1). doi:10.1542/peds.2019-3046
2. Klass P, Hutton JS, Dewitt TG. Literacy as a Distinct Developmental Domain in Children. JAMA Pediatrics. 2020;174(5):407. doi:10.1001/jamapediatrics.2020.0059
3. Ness M. Pediatricians Have a Role in Early Screening of Dyslexia. International Dyslexia Association. Published December 13, 2019. Accessed August 15, 2020. https://dyslexiaida.org/an-invitation-to-pediatricians-for-early-dyslexia-screeners/
4. Rey-Casserly C, Mcguinn L, Lavin A. School-aged children who are not progressing academically: considerations for pediatricians. Pediatrics. 2019;144(4). doi:10.1542/peds.2019-2520
5. International Dyslexia Association. Definition of Dyslexia. Accessed 9/27/20.
https://dyslexiaida.org/definition-of-dyslexia/
6. Catts HW, Hogan TP. Dyslexia: An ounce of prevention is better than a pound of diagnosis and treatment. doi:10.31234/osf.io/nvgje
7. Ozernov-Palchik O, Gaab N. Tackling the 'dyslexia paradox': reading brain and behavior for early markers of developmental dyslexia. Wiley Interdiscip Rev Cogn Sci.2016;7(2):156-176. doi:10.1002/wcs.1383
8. International Dyslexia Association. Dyslexia Screener for School-Age Children. Accessed 9/27/20. https://dyslexiaida.org/screening-for-dyslexia/dyslexia-screener-for-school-age-children/
9. Willcutt EG, Boada R, Riddle MW, Chhabildas N, DeFries JC, Pennington BF. Colorado Learning Difficulties Questionnaire: validation of a parent-report screening measure. Psychol Assess. 2011;23(3):778-791. doi:10.1037/a0023290
10. Multi-Tiered System of Supports (MTSS Accessed August 16, 2020. ). https://www.cde.state.co.us/mtss/handouts-mtss-overviewshpgbreakoutsept-2017
11. Hanford E. Why aren't kids being taught to read? | Hard Words | APM Reports. Published June 22, 2020. Accessed August 16, 2020. https://www.apmreports.org/episode/2018/09/10/hard-words-why-american-kids-arent-being-taught-to-read
12. Hanford E. How a flawed idea is teaching millions of kids to be poor readers | At a Loss for Words | APM Reports. Published August 14, 2020. Accessed August 16, 2020. https://www.apmreports.org/episode/2019/08/22/whats-wrong-how-schools-teach-reading
13. Hanford E. How American schools fail kids with dyslexia | Hard to Read | APM Reports. Accessed August 16, 2020. https://www.apmreports.org/episode/2017/09/11/hard-to-read
14. Hanford E. New salvos in the battles over reading instruction | APM Reports. Accessed August 16, 2020. https://www.apmreports.org/episode/2019/12/20/new-people-organizations-reading-instruction
15. Schimke A. Colorado's largest teacher preparation program dinged over reading instruction - again. Chalkbeat Colorado. Published June 10, 2020. Accessed August 16, 2020.
16. Colorado Department of Education. 2019 CMAS State Achievement Results. Accessed 9/27/20. https://www.cde.state.co.us/assessment/2019_cmas_ela_math_statesummaryachievementresults
17. Schimke A. Colorado wants schools to use reading curriculum supported by science. Here are the ones that made the cut. Chalkbeat Colorado. Published April 24, 2020. Accessed August 16, 2020. https://co.chalkbeat.org/2020/4/23/21233583/colorado-wants-schools-to-use-reading-curriculum-backed-by-science-heres-what-made-the-cut
18. Schimke A. Why do so many Colorado students struggle to read? Flawed curriculum is part of the problem. Chalkbeat Colorado. Published March 27, 2020. Accessed August 16, 2020 https://co.chalkbeat.org/2020/3/27/21231320/why-do-so-many-colorado-students-struggle-to-read-flawed-curriculum-is-part-of-the-problem
19. Assessments That Drive Instruction. Curriculum Associates. Accessed August 16, 2020.
https://www.curriculumassociates.com/products/i-ready/i-ready-assessment
20. Istation Reading. Istation. . Accessed August 16, 2020 https://www.istation.com/Reading
21. Promise Project. Accessed August 16, 2020. https://www.promise-project.org/promise2/
22. Schimke A. Colorado parents, here’s what to ask your child’s school about reading instruction. Chalkbeat Colorado. Published October 26, 2020. Accessed November 2, 2020. https://co.chalkbeat.org/2020/10/26/21534976/colorado-parents-heres-what-to-ask-your-childs-school-about-reading-instruction
23. US Department of Education. Individuals with Disabilities Education Act. Accessed November 2, 2020. https://sites.ed.gov/idea/statute-chapter-33/subchapter-i/1400
24. Schimke A. What do Jeffco schools use to teach reading? District leaders don’t know, and neither does the public. Chalkbeat Colorado. Published September 25, 2020. Accessed November 2, 2020. https://co.chalkbeat.org/2020/9/25/21456381/what-do-jeffco-schools-use-to-teach-reading-district-leaders-dont-know-and-neither-does-the-public
25. Schimke A. Many Jeffco schools use discredited curriculum to teach students how to read. Chalkbeat Colorado. Published October 15, 2020. Accessed November 2, 2020. https://co.chalkbeat.org/2020/10/15/21517569/many-jeffco-schools-use-discredited-curriculum-to-teach-students-how-to-read
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