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Dyslexia

  • Overview

    - Nadine Gaab, PhD, Division of Developmental Medicine, Boston Children's Hospital

    Dyslexia is a learning disorder that makes it difficult for a child to read, write and spell. If your child has dyslexia, he may have a hard time keeping up with his classmates at school. This can be very stressful for him—and for you. 

    As you read the information on the following pages, keep in mind that you’re not alone: dyslexia is quite common, and it’s a very treatable condition. You might find it comforting to familiarize yourself with the basics about the condition: 

    • Approximately 5 to 17 percent of children have some form of dyslexia.
    • A child with dyslexia has low reading levels, yet often average  or above-avergae cognitive abilities.
    • Dyslexia is also referred to as a “reading disorder and belongs to the family of learning disabilities..” The two terms are often used interchangeably.

    Dyslexia symptoms can include:

    • difficulty sounding out letters and words
    • problems with recognizing letters
    • challenges with reading comprehension

    Some kids with dyslexia also have attention-deficit hyperactivity disorder (ADHD).

    • It’s very important to get the right diagnosis—and to obtain it promptly—so you can ensure that your child receives appropriate treatment at school.

    Although dyslexia can be a lifelong condition, modern treatment methods can be very effective.

    How Children’s Hospital Boston approaches dyslexia

    The expert clinicians in the Children’s Hospital Boston Division of Developmental Medicine have helped hundreds of children and families living with dyslexia. We are highly attuned to the fact that dyslexia not only makes learning difficult for children—it can also affect a child’s self-esteem and impact the entire family, too.

    Children’s offers a wide range of services to diagnose and treat dyslexia, including comprehensive testing for the condition and for related disorders like ADHD. Our clinicians will:

    • meet with you to discuss your child’s diagnosis
    • address any questions or concerns you may have
    • work with you to formulate the right approach to treating your child’s learning disability

    We have seen time and time again how treatment can help a child with dyslexia feel capable and confident again, and we have watched countless kids with dyslexia go on to lead happy, healthy and enriched adult lives.

    Your child’s treatment team will create a customized plan of care that draws from Children’s multidisciplinary expertise. When treating dyslexia, we involve specialists in such fields as:

    Children’s has experts available across departments to meet all of your child’s needs—as well as a dyslexia resource specialist who can help you find support for your child in many ways: from selecting the right tutor to making the best use of computer-based dyslexia programs.

    While Children’s is known worldwide for our science-driven approach—our researchers are pioneering several pivotal studies on dyslexia—we never lose sight of the fact that your child is an individual … and never “just a patient.” Beginning with your very first visit at Children’s, you’ll work with a team of experienced, compassionate professionals who are committed to supporting your family’s medical, emotional and psychosocial needs.

    Dyslexia: Reviewed by Nadine Gaab, PhD
    © Children’s Hospital Boston; posted in 2011

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  • In-Depth

    Your child may be under a lot of stress if she’s experiencing symptoms of dyslexia—and that means you’re feeling a strain, too. Every parent wants to see their child do well at school and build a healthy level of self-confidence. Because dyslexia affects reading—a skill that’s essential to learning—kids with dyslexia face challenges in the classroom that can sometimes affect how they see themselves overall. 

    However, there’s a lot to feel reassured about: dyslexia is a common disorder, and it doesn’t have the stigma attached to it that it did years ago. Most importantly, dyslexia can improve tremendously if they right intervention is chosen.

    It’s natural to want to learn as much as possible about dyslexia so you have a better sense of what’s ahead for you and your child. Read on for a snapshot of the condition.

    What is dyslexia, exactly?
    Dyslexia is a neurological condition that interferes with the acquisition and processing of language and print. Specifically, it’s a reading problem that results from the inability to translate letters into their corresponding sounds—and conversely, to relate sounds to their corresponding letters.

    A child with dyslexia can have difficulties with many aspects of language, including reading, writing and phonological processing (sounding out words). In some cases, dyslexia can also cause problems with arithmetic. 

    Are there different types of dyslexia?
    Dyslexia can manifest itself in different ways. It is common for children with dyslexia to experience one or several of the following challenges:

    • problems with the auditory side of language (the way sounds are translated into different symbols)
    • difficulty recognizing letters
    • struggling to link multiple words together (even if individual words can be read without a problem)  
    • difficulty with language comprehension (for example, taking a long time to process words; by the time the end of a sentence or paragraph is reached, the beginning has been forgotten) 

    What’s the difference between developmental dyslexia and acquired dyslexia?
    Nearly all the patients we see at Children’s have developmental dyslexia, meaning that  it develops within the first years of life  or some markers may even be present at birth.

    However, some children (and adults, too) develop dyslexia as a result of a stroke, car accident or other type of trauma. This is called acquired dyslexia, and it is fairly rare. A child with this type of dyslexia will come to Children’s Department of Neurology for treatment.

    Causes

    What causes dyslexia?

    Unfortunately, no one knows exactly what causes a child todevelop dyslexia. There is evidence to suggest that the disorder is inherited in a lot of children, meaning it runs in families. 

    However, just because a parent has dyslexia—or even both parents—it doesn’t mean their child will necessarily be dyslexic. There have been cases, for instance, where three siblings in a large family have dyslexia, but two other siblings do not. There are also families, where one child has dyslexia but no other family member is affected. Researchers are still working to pinpoint the genetic mechanisms behind dyslexia.

     A very small percentage of people with dyslexia have what’s called the acquired form of the condition. This means they developed the disorder later in life. Acquired dyslexia can be caused by a stroke, brain injury or other type of trauma. Neurologists can help to treat this type of dyslexia.

    Signs and symptoms

    What are the symptoms of dyslexia?

    Dyslexia symptoms can vary from child to child, but will usually include one or more of the following: 

    • problems with rhyming
    • challenges recognizing letters
    • difficulty recognizing that two words—“garbage” and “gorilla,” for example—start with the same sound or letter
    • struggling to repeat nonsense words and phrases, like “SpongeBob SquarePants”
    • problems with comprehension (for example, taking so long to process words that, by the time the end of a sentence or paragraph is reached, the beginning has been forgotten)
    • difficulty with fluency of language (some children can read individual words without a problem, but have problems linking many words together)

    In addition to these symptoms, children with dyslexia may feel frustrated or embarrassed at school because certain lessons and assignments are hard for them.

     

    Questions to ask your doctor 

    You and your family play an essential role in your child’s treatment for dyslexia. It’s important that you share your observations and ideas with your child’s treating clinician, and that you have all the information you need to fully understand the treatment team’s explanations and recommendations.

    You’ve probably thought of many questions to ask about your child’s dyslexia and treatment plan. It’s often very helpful to jot down your thoughts and questions ahead of time and bring them with you, along with a notebook, to your first appointment. That way, you’ll have all of your questions in front of you and can make notes to take home with you. 

    (If your child is old enough, encourage her to bring her own set of questions to the appointment, too!)

     Some initial questions for your doctor might include:

    • How did you arrive at this diagnosis?
    • Are there any other conditions my child might have instead of, or in addition to, dyslexia?
    • Does my child need further testing?
    • How can I help my child at home?
    • How should I talk to my child about his dyslexia?
    • How can I help my child build a healthy self-image?
    • What should I tell my child’s teachers about his dyslexia?
    • How can I best work with the school going forward?
    • Do you feel my child needs to see a dyslexia specialist outside of school?
    • What should I tell my child’s siblings, other family members and classmates about his dyslexia?
    • Do I need to make any other changes to my child’s home and school routines?
    • What products—such as computer-based programs—do you recommend trying?
    • Can you point me to other educational and support service resources in my area? What about online?

    FAQ

    Q: Is there a cure for dyslexia?
    A: Unfortunately, no. There is no pill or “quick fix” for dyslexia. Children’s clinicians usually explain to parents that the brain is akin to a muscle, in the sense that it can be trained to operate differently (and more efficiently).

    Just as we can go to the gym to train our bodies, it is possible to train the mind and minimize the effects of dyslexia. Parents, teachers and other caregivers can play a major role in helping kids with dyslexia “train their brains.” Although dyslexia often is a lifelong condition, it is also a condition that can be greatly mitigated with the right treatment.

    Q: How common is it for a child to have attention-deficit hyperactivity disorder (ADHD) as well as dyslexia?
    A: As many as 40-50 percent of children who have ADHD also have dyslexia or another learning disorder. 

    Q: My child has started feeling uncomfortable around her peers, as well as in the classroom. Is this common in kids with dyslexia?
    A: Absolutely. People who are unfamiliar with dyslexia—and this includes other children—sometimes falsely assume that a dyslexic child is “lazy” or has a low level of intelligence. This can make things very difficult and stressful for the child, as it can lead to teasing, bullying and a sense of being “left out” or “different.”  (Compounding the issue is the fact that having a reading problem can also be damaging to the child’s own view of himself and his sense of self-worth.)

    You can serve as your child’s advocate at school, at home and in the community. Your treating clinician will help you determine the best way to approach your child’s teachers, and can advise you on how to talk about his dyslexia with classmates, siblings and other family members. Remember—and remind your child—that kids with dyslexia can do anything other kids can. They’re equally capable of building good friendships, taking on leadership roles and excelling in many academic subjects, sports and hobbies.

    Q: How does dyslexia affect IQ?
    A:
    It doesn’t! Some people mistakenly think that a child with a reading problem must not be intelligent. Yet the fact is, many children with dyslexia have average to above-average intelligence. 

    Q: Does my child’s school have an obligation to help him tackle his dyslexia?
    A: Yes. If your child has been diagnosed with dyslexia, his school is obligated to develop an Independent Education Plan (IEP) to help him reach his full academic potential.

    However, keep in mind that some schools have more resources and access to specialty services than others—so the extent of what your child’s school can do will depend on a number of factors. Your treating clinician can advise you about the right questions to ask the school and where to go for additional guidance.

    Q: What can an Individualized Education Plan (IEP) do for my child?
    A:
    Once a child is diagnosed with dyslexia, his parents and educators will work together to develop an IEP that’s designed to help him reach his full potential at school. 

    An IEP gives your child access to many types of assistance throughout his school career, such as:

    • additional time to take tests and complete assignments
    • one-on-one tutoring with a reading specialist
    • videotaping or audio-recording lessons (lessening or eliminating the need to take written notes)

    Q: How do I start the process of establishing an IEP for my child?
    A: Before moving forward with creating an IEP, you first need to provide documentation of your child’s formal diagnosis by a licensed health care professional. (It’s possible that, even with a formal diagnosis from a clinician, your child’s school might want to conduct some additional tests to confirm the diagnosis and determine how they can best assist.)

    Q: Will my child’s insurance plan cover her treatment for dyslexia?
    A:
    The answer depends on your specific insurance provider and plan. Ultimately, federal law mandates that it is the responsibility of schools—not health care professionals—to treat children with learning disabilities like dyslexia. For this reason, health insurance companies sometimes won’t cover medical assessments and treatments for dyslexia.

    However, it is extremely common for dyslexia to go hand-in-hand with other conditions like attention-deficit hyperactivity disorder (ADHD) that typically are covered by health insurance. Many kids who come to Children’s Hospital Boston for ADHD are subsequently found to have dyslexia, too. Usually, such “dual diagnoses” are covered by insurance—but you should always contact your provider directly to learn the specific details of your child’s coverage, and to ask any questions you may have.

    Q: How can I help my child overcome self-esteem problems relating to his dyslexia?
    A: It’s vital to consistently support your child by praising him for his intellectual curiosity, intelligence and participation in discussions. Use compliments like, “you are really smart” and “you really know a lot.” Remind him of two important things: one, that having a reading problem doesn’t make him any less intelligent—and two, that with practice, he can train his brain to make reading easier.

    Q: Could I have done something to prevent my child’s dyslexia?
    A: It is not possible to prevent dyslexia; nothing you did—or didn’t do—before your child was born or during his formative years could have caused him to develop this reading problem.

    While dyslexia can’t be prevented, it can be treated with a great degree of success if caught early and addressed properly. Here at Children’s Hospital Boston, we’re working on ways of detecting dyslexia symptoms before kids even start to read. Learn more about this research.

    Q: What complications can result from untreated dyslexia?
    A: If a child’s dyslexia goes undiagnosed and untreated, she’s likely to:

    • struggle in school

    • become easily frustrated

    • develop low self-esteem

    • fail to reach her full academic and personal potential

    In addition, research has demonstrated that kids with untreated dyslexia are at a greater risk of:

    • dropping out of school

    • ending up in the juvenile justice system

    • not pursuing higher education

    For all of these reasons, it’s essential that a child who shows possible signs of dyslexia receives a prompt evaluation and diagnosis from a qualified health care professional.

    Q: If my child has dyslexia, should I be worried about his overall health and well-being?
    A: While every child’s situation is different, it’s true that kids with dyslexia are under increased stress at times—so you should always be vigilant and aware of changes in your child’s mood, self-confidence and behavior. Some children with dyslexia also have attention-deficit hyperactivity disorder (ADHD) or other developmental disorders, so it’s crucial to get a thorough assessment and diagnosis from a pediatric specialist with expertise in treating learning disabilities.

    All children with dyslexia will go through periods where they may feel anxious, frustrated, sad and even angry. Parental encouragement is essential to helping a child through these difficult times. Here at Children’s Hospital Boston, our expert child and adolescent psychologists, social workers and counselors and other mental and behavioral health professionals are available to help you provide your child with the full spectrum of support he needs.

  • Tests

    How is dyslexia diagnosed?

    A child may be diagnosed with dyslexia if he or she has a low average to above average I.Q. yet a low reading level. There is no one test used to diagnose dyslexia, rather a series of tests is used to assess a broad range of language skills, including word recognition, decoding and encoding skills, phonological processing and reading comprehension. 

    Before a diagnosis of dyslexia is made, other conditions that can affect reading—like a vision or hearing problem or limited educational access—are ruled out. A diagnosis may be conducted privately or by a reading specialist in a school.

    Often, a parent or a teacher may request a diagnosis for a child if they see symptoms of dyslexia. Symptoms of dyslexia include: 

    • problems with rhyming or recognizing that two words—like garbage and gorilla, for example—start with the same sound/letter 

    • a problem repeating nonsense words, like “SpongeBob SquarePants,” for example

    • problems with comprehension (for example, if it takes a child so long to process words he or she forgets what you read at the beginning of sentence or passage.

    • problems recognizing letters)

    • problems with fluency; some children can read individual words without a problem but have problems linking many words together.

    Why is it so important to get a diagnosis right away?

    The sooner a child gets a diagnosis, the sooner he or she can get the appropriate help at school. With a diagnosis, educators can create an independent education plan (IEP), which can help a child throughout his or her entire school career, including college. Sometimes a child with dyslexia is mistakenly thought to have low motivation, low intelligence or sensory impairment. Such misdiagnoses can delay a child with dyslexia from receiving proper treatment.

     Picturing dyslexia
    Ava Porter is a young child that participated in a study at Children’s Hospital Boston seeking to discover if dyslexia can be seen through brain imaging, before dyslexia is apparent when a child struggles with reading. The goal is to identify and treat dyslexia before it affects reading ability. Read more about this study in the boston.com article

     

  • Boston Children's Hospital has been an innovator in diagnosing and treating dyslexia for decades. Our clinicians have extensive experience in treating children, adolescents and adults with all forms of the condition.

    Your child's specific treatment process will depend on many factors, including:

    • her exact symptoms
    • her age
    • any other learning or medical disorders she may have
    • your family's preferences for treatment 

    Here at Children's, we consider each child an individual – never “just another patient.” Our team will approach your child's diagnosis and treatment options with sensitivity, compassion and knowledge informed by our expertise across multiple disciplines. 

    Treatment for dyslexia is an ongoing process that often requires multiple approaches. You are a key member of your child's treatment team, along with her doctors, other family members and educators. Working together, you and your child's clinicians will develop a comprehensive treatment plan that might go something like this: 

    • The first step of treatment is to get a diagnosis that pinpoints the specific type of dyslexia your child may have. The clinician who makes the diagnosis will help you determine what the next steps are.
    • Once your child has a diagnosis of dyslexia, you can meet with educators at his school to set up an Individual Education Plan (IEP). This will offer your child specialized help and support.
    • Through an IEP, teachers will made aware of your child's learning needs; outside of the classroom, there may be additional help in a special education setting—with a reading specialist, for example.
    • Educators may use different methods for helping your child with dyslexia, including the Slingerland Method, the Orton-Gillingham Method or the Project READ approach.
    • Most likely, educators will also use some form of interactive technology.
    • At home, you can help your child by providing emotional encouragement and support. You can also read with your child and help him with his homework.
    • Many parents opt to provide additional treatment for their child in a private setting.


    Coping and support

    It is completely normal to feel stressed, and even scared or sad, about your child's dyslexia. Here at Boston Children's Hospital, we remind parents that dyslexia is common: it's not caused by something you did (or didn't) do, and it has absolutely no reflection on your child's intelligence or potential. 

    Today, understanding about dyslexia is light years beyond where it was in the ‘70s and ‘80s. The stigma attached to the condition is gone: nearly everyone knows someone (and usually more than one person!) with dyslexia—and that includes a whole lot of smart, successful and well-rounded people.

     If your child does have dyslexia, it's really important to support him by:

    • complimenting him on his achievements, strengths and curiosity (Try saying things like “you are really smart” and “you really know a lot!” when he asks a good question or makes a good point in a discussion.)
    • reminding him that you are there to help him with reading and any other problems relating to his dyslexia
    • encouraging him to “keep plugging away” with his reading—and not letting him use his dyslexia as an excuse to stop trying. Often, kids with dyslexia will get frustrated and say, “Why should I bother to try to read when I have dyslexia?” A good response is to remind your child that it's possible to “teach” his brain to read better, just like exercising every day will “teach” his muscles to develop and help him become more agile. If he exercises his mind in the right way, reading will get easier (and more rewarding) in time.  

    Remember: kids with dyslexia can do the same things as other children. They're fully capable of reaching their intellectual potential, feeling great about themselves and going on to do just about anything they want to do.

    But during the times you (and your child) are struggling a bit, also remember that you have a lot of backup: Doctors, counselors and other members of your Boston Children's Hospital treatment team are all here to support you.


    Patient and family resources at Boston Children's Hospital 

    • Children's Center for Families is dedicated to helping families locate the information and resources they need to better understand their child's particular condition and take part in their care. All patients, families and health professionals are welcome to use the center's services at no extra cost. The Center for Families is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
       
    • Children's Behavioral Medicine Clinic helps children who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:
    • being sick
    • facing uncomfortable procedures
    • taking medication
    • changes in friendships and family relationships
    • managing school while dealing with a chronic condition
       
    • The Experience Journal was designed by Children's psychiatrist-in-chief, David DeMaso, MD, and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about living with a variety of medical, learning and behavioral disorders.
       
    • The Children's chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions—who will listen to you, pray with you and help you observe your own faith practices during your child's treatment.
       
    • Children's International Center is a resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.



     

  • Research & Innovation

    At Children’s Hospital Boston, our care is informed by our research, and our discoveries in the laboratory strengthen the care we provide at each child's bedside. Children’s scientific research program is one of the largest and most active of any pediatric hospital in the world. 

    In particular, researchers in our Laboratories of Cognitive Neuroscience are:

    • making new inroads in understanding the causes and development of nervous system diseases and disorders
    • paving ground for promising new treatments and interventions
    • offering ideas and discoveries that could lead to better treatments and cures

    Here are some of our current research projects with promise for treating dyslexia:

    The Participant Recruitment Database at Children’s

    Our clinicians within the  Laboratories of Cognitive Neuroscience compile data that plays a crucial role in Children’s pioneering research. We work with children with and without dyslexia or other diagnoses, so we can do comparative analysis. 

    Anyone can sign up for this database study. If we have a study that you are eligible for, we’ll notify you—you can then opt out or decide to participate. Learn more. 

    How participating in the Children’s dyslexia studies can help your child—and all children with dyslexia

    If you and your child decide to participate in one of our dyslexia studies, you will receive a summary of all your child’s test scores. We’ll sit down with you and go over the results; this is information that often proves very helpful when talking to educators.

     What do the findings of Children’s dyslexia studies suggest so far?

    One of the most significant findings is that we see brain markers of dyslexia in children prior to the onset of reading. Our research suggest that differences in brain structure between children with and without a family history of dyslexia  are present before children even start trying to read.

    Using brain imaging, genetics to catch dyslexia early

    Going forward, Children’s aims to pinpoint the precise age you start to see differences in brain structure in children predisposed to dyslexia—using brain imaging and genetic testing. This will help determine the ideal age for intervention. Read about a recent Children’s study on catching dyslexia in infants and pre-readers (and be sure to check out this link, too). 

    Music and dyslexia: Examining a possible relationship

    Children’s has conducted several innovative studies that examine the relationship of dyslexia and music or sound based interventions.. Read more about these studies.

    Clinical trials

    Children’s is known for pioneering some of the most effective diagnostic tools, therapies and preventive approaches in pediatric cardiology. A significant part of our success comes from our commitment to research—and to advancing the frontiers of mental health care by conducting clinical trials.

     Children’s coordinates hundreds of clinical trialsat any given time. Clinical trials are studies that may involve:

    • evaluating the effectiveness of a new drug therapy
    • testing a new diagnostic procedure or device
    • examining a new treatment method for a particular condition
    • taking a closer look at the causes and progression of specific diseases

    Children’s is involved in several multi-site clinical trials and studies focusing on pediatric cardiology and cardiac surgery, in particular. While children must meet strict criteria in order to be eligible for a clinical trial, your child may be eligible to take part in a study. Before considering this option, you should be sure to:

    • consult with your child’s treating physician and treatment team
    • gather as much information as possible about the specific course of action outlined in the trial
    • do your own research about the latest breakthroughs relating to your child’s condition

    If your physician recommends that your child participate in a clinical trial, you can feel confident that the plan detailed for that study represents the best and most innovative care available. Taking part in a clinical trial at Children’s is entirely voluntary. Our team will be sure to fully address any questions you may have, and you may remove your child from the medical study at any time.

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