What to do if you think your child has Dyslexia, (Part 2 of 2): Getting a diagnosis
By Dr. Sheila Clonan
..First, let’s address the issue of whether or not dyslexia is an appropriate, school-based diagnosis supported by special education law. The short answer: YES. Dyslexia is a specific presentation of a language-based “Specific Learning Disability” in Reading—the most common one, in fact. Special Education law (or IDEA) defines a specific learning disability as
“a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in the imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia.” (See 20 U.S.C. §1401(30) and 34 CFR §300.8(c)(10) (emphasis added).
So again, yes.
As alluded to in Part 1 of this blog post, teachers, school psychologists or other school staff have not been equipped or trained, in most instances, to recognize or treat dyslexia. Studies show that most teacher training programs aren’t teaching the science of reading, including early identification of children at risk for reading failure, daily training in linguistic and phonological skills, explicit instruction in letter sounds and syllables, and teaching phonics in a sequential order that research has shown will be most beneficial to students. Even among those teachers who earn a Master’s degree in Reading, few have had any courses on dyslexia; the findings are similar for school psychologists. It is little wonder that many deny it’s very existence! They may mean well and want to help your child, but without proper training, experience and tools, they are left to fall prey to the common misconceptions regarding dyslexia that permeate the general public.
So what is a parent of a struggling reader to do? First, you can request that your child be tested for a reading disability, or dyslexia. If you put that request in writing, your school must complete the evaluation in 60 days (see Parent’s Guide to Educational Evaluations and Assessments). Be aware, however, that most public schools don’t test children for dyslexia. Federal education law only requires that they test to determine if the child is eligible for special education services and if so, under what category. Depending on how old your child is, how far behind, and what kinds of specific weaknesses she is exhibiting, the school assessment may—or may not—find that your child meets eligibility as a student with a learning disability. They just won’t (likely) call it dyslexia. And this can be a problem. Decades of research has uncovered exactly what students with dyslexia need: explicit, systematic instruction in phonological awareness, phonics, and spelling patterns and rules. If your school has teachers trained and able to provide this kind of multisensory structured, diagnostic teaching to your child, then you have hit the jackpot—with or without a specific dyslexia diagnosis. If they don’t, however, whether or not your child is diagnosed with dyslexia or a learning disability, you are still not “home free,” because now your fight will be to get the appropriate services.
Additionally, once tested, particularly if your child is still in elementary school, he may perform just well enough on standardized tests of word reading and reading comprehension that the school will say he “doesn’t qualify” for special education and no additional services will be provided. This is the difference between eligibility testing and diagnostic testing. The latter, best performed by a highly trained evaluator with expertise and experience in dyslexia, will provide a comprehensive assessment of your child’s phonological and orthographical processing skills, as well as his ability to read “nonsense words” as well as regular and irregular words fluently and accurately. In addition, the evaluator will likely assess your child’s memory and learning skills as well as rapid naming and other cognitive processes important to reading. A thorough assessment such as this may uncover that your child’s foundational skills are weak and he does, in fact, meet criteria for a dyslexia diagnosis, even if he has learned to “get by” through a combination of memorizing and guessing words (inefficient strategies that will fail him as he advances through school).
Unfortunately, to get this kind of comprehensive, diagnostic assessment, you may have to seek an outside evaluation. Additionally, a well-written diagnostic report will describe and analyze the test results and include the legal language needed to justify having a public school issue an Individualized Education Plan (IEP) or 504 Plan with needed interventions and classroom accommodations, as well as a list of the specific recommendations to support the child at school and at home. Professionals with extensive training in diagnosis can accurately identify the precursors to developing dyslexia as early as age 5 and can make a definitive diagnosis as soon as your child begins to struggle with learning to read, spell, and write. The earlier a diagnosis is made, the quicker your child can get back on track, and the less likely she is to experience failure and subsequent blows to her confidence and self-esteem.
A dyslexia diagnosis, however, is only the first step. As mentioned in Part 1 of this blog post, few public school teachers—literacy, special education or otherwise—have adequate training in either dyslexia or the specific kinds of explicit, systematic, structured literacy instruction that children with dyslexia require. Unfortunately, commonly used instructional approaches such as Guided Reading or Balanced Literacy are particularly ineffective for students with dyslexia, because they lack the explicit focus on decoding skills that these students so desperately need.
What does work is scientifically-based, structured instruction that explicitly and systematically teaches decoding skills with attention to phonological awareness (including rhyming and manipulating sounds in words), sound: symbol association (phonics), instruction in the basic syllable types of the English language, and study of morphology (including, for example, base words, roots, prefixes and suffixes), syntax (ie, grammar and mechanics) and semantics (comprehension). Instruction in these components needs to be systematic, cumulative, and of sufficient intensity and duration. Many experts recommend a minimum of 100 minutes of individualized, diagnostic teaching.
Individualized interventions such as the Orton-Gillingham approach fulfill these requirements, but they can also be found in prepackaged programs like the Wilson Reading System and the Barton Reading and Spelling program. It is important to note, however, that the program is only half the recipe: The teacher needs to be highly trained for the intervention to be most effective. If your school does not have someone trained in this kind of instruction, you may have to look for outside tutoring. This is particularly unfortunate, as it serves to disadvantage students whose parents cannot afford such help.
Although it is never too late for intervention, early intervention closes the gap more quickly and efficiently, preventing needless struggles on your child’s part. The “wait and see” approach is never better. In fact, research tells us that only one in five students who read poorly at the end of 1st grade will ever catch up to grade level in reading without access to specialized intervention programs as described above. Yet, 95% of poor readers can be brought up to grade level if they receive (the right kind of) help early. If you believe your child is struggling, please do not hesitate to seek help. Whether your work with your school or seek help privately, continue to advocate for your child until you secure the help she needs. Talk with other parents, consult with an advocate, and be persistent!
Dr. Sheila Clonan is a NYS licensed school psychologist practicing in Central New York.
4/5/2017 11:31:07 am
Thank you so much for these blog posts, Sheila! These are very timely for us and it was wonderful to talk with you yesterday about evaluating our son.
Dr. Sheila Clonan
4/17/2017 07:10:21 pm
I am so glad you found them helpful, Michelle! It can be so hard for parents to get accurate information!
9/26/2017 04:05:58 am
This was a very insightful write-up, thanks a lot for sharing your views. it has been a year since we found a good special learning school for our daughter, which has been remarkably helping her out. So, I believe now that special education is also a part of diagnosis.
1/12/2018 11:49:07 am
Sheila, we live in western NY and have a daughter that is struggling with reading now in third grade. We are not getting very far with the school. She has an IEP already, but my gut tells me she has some kind of processing disorder as well we have not addressed. Whom might you recommend to see outside of school that could help us or do the appropriate testing? Thanks for the time, Becky Griffith
Dr. Sheila Clonan
1/24/2018 03:22:52 pm
1/15/2020 03:47:16 pm
Thank you for pointing out possible steps to take if a child has dyslexia. My sister's youngest son was just diagnosed with dyslexia. I think she should look into getting a tutor for him so he doesn't fall behind in school.
9/6/2022 11:48:25 pm
Hi ! I live in Brooklyn and would love a recommendation for a tutor that helps with dyslexia and phonics. Thanks so much
1/9/2023 06:02:36 am
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It really helped when you said that kids with dyslexia would need explicit, systematic instruction to help with their phonological awareness, phonics, spelling, and other rules according to decades of research. I will share this information with my sister because she feels like her daughter has this condition. She still hasn't been able to memorize the letters even at the age of eight. So she might need the help of a private dyslexia tutoring service if she gets diagnose.
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