My son is 6 years old (in first grade). We noticed a problem with his learning and behavior last year, but it took us a while to realize it went beyond "boys will be boys" and "boys learn slower" etc. I took him to a neurologist because of his inability to focus on anything and he was diagnosed with ADHD (it was not a surprise- it runs in our family). He is now on 18mg of Concerta.

They also wanted to run a series of cognitive tests which I turned down, because we have had enough testing for awhile. He was simultaneously being tested in school for various things. They determined he had a learning disability and a problem decoding. They never said the word “dyslexia” on paper, but after setting up a IEP and speaking with his special ed teacher, she is pretty sure that's what the issue is. In addition to his IEP in school, I hired an Orton Gillingham (OG) tutor to help with his reading twice a week. He has definitely shown improvement with the medication and tutor, but is still well below grade level. He is not on a "hold over" list because he just started with his IEP, but I was urged to hold him back for a year, and let him do first grade again with the additional help.

I guess my question is, should I go through with the testing from the neurologist? Is there any additional benefits to have him officially labeled with dyslexia from a doctor as opposed to having him labeled with a disability from the DOE? Thank you for any advice you could give me.
Dr. Pierson's Response: 
I am in Michigan, and I think from your area code you are in the NYC area. I am not familiar with the specifics of NY special education code; but I do know that all states must follow federal law, so the rules are similar. You can read more about the rules here. In MI, the schools do not diagnose dyslexia, even though dyslexia is listed under specific learning disability (LD) in the MI special education rules. So, on the issue of whether you need a diagnosis of dyslexia from the schools versus from outside, if your school district is diagnosing dyslexia, then I would have the school personnel do that assessment given that it is no charge to you.

The question, as I see it, is whether the school can provide the kind of explicit, systematic, intensive instruction that has been shown to be effective in the research regardless whether your son has “label” of dyslexia or specific learning disability; and I have found that this can be challenging for schools for a variety of reasons -- lack of resources (both financial and personnel) and lack of teacher training in teaching reading to the student with dyslexia to name a couple. According to the literature, instruction in phonemic awareness, phonics, text comprehension, and vocabulary, which includes word study (e.g., inflectional words endings such as -ing and -ed; Latin and Greek roots, prefixes, and suffixes) is key to teaching reading. Add to that explicit instruction in spelling patterns and rules, and writing. Your son will need a good comprehensive assessment to identify his strengths and weaknesses so that the areas specific to his needs can be addressed.

It is excellent that your son received the OG training outside of school. Now that said, many of the clients with dyslexia whom we see at my private clinical practice have been through OG tutoring and needed further intervention because dyslexia is a language-based learning disability. I have found that many times the challenges these kids/teens have with spoken language is not identified or addressed. Typically, OG tutors do not have the training in remediating spoken language challenges. Sometimes the challenges with spoken language are subtle and don't manifest until the kids get older and language becomes more non-literal (upper elementary/middle school), so I'd keep an eye on this relative to your son’s development.

Relative to him having additional testing by a neurologist, I don't think that's necessary at this point. The benefit with a dyslexia diagnosis is it gives you a specific 'word' to talk about his learning challenges with him -- you can use that word now. And, you should be. He needs to understand that he is dyslexic and the strengths that come with being dyslexic. You could think about testing down the road by a psychologist (you don't need a neurologist unless it's to deal with the ADHD stuff); he will definitely need a psychological assessment during his last years of high school so that he can get any accommodations in college (albeit that’s down the road).

Relative to retention -- as much as schools like to recommend this for students who are having a challenging time with the curriculum, the research does not support retention for kids with LD. These students do not need more of the same; they need differentiated instruction (explicit and systematic). Typically, a general education classroom setting is not designed to offer that kind of instruction, so a repeated year in general education is not what the students with LD need. Now, you did say that the school was going to give him more special education instruction, which is good, but he'd get that in 2nd grade. The reason to consider retention would be if he is young and needs more time developmentally. For example, if he started school too early and, developmentally, wasn't ready to learn or is more immature than his peers then maybe retention would help. But, typically this is not the case with dyslexic kids. And, because they are smart, they quickly become bored hearing the content a second time because, although they may not have the skills to show it, they did understand the content the first time around. So, this is a very individual decision with many pieces to the puzzle for consideration.

In summary -- relative to needing a neurological evaluation at this time, I do not see how that will benefit him relative to determining what the school needs to do. A dyslexia diagnosis is beneficial in giving you a word to discuss his learning challenges with him as well as helping a professional understand what he needs (an assessment of strengths and weaknesses is necessary to determine what exactly to work on in intervention). Who that diagnosis comes from is a moot point. And, retention? Unless he is developmentally young and you think he missed learning the 1st grade curriculum, the literature does not support retention for students with LD. They do not need another year of "more of the same" -- they need different; specialized individual instruction.