Congratulations! You have just given birth to a beautiful tiny human and are now stepping into the wonderful world of parenthood. You are excited, and nervous, and looking forward to watching your little person grow. Everyone you know, as well as some people that you don’t, is offering their best advice on what and what not to do — how to get this parenting thing right. You have read all the books and you have learned what to expect. “Your child should be crawling around this age,” they say, “and walking by this time”. “He or she should be babbling about now and saying a few words by then.”
We rely on our children’s pediatricians in the early years when we have a question, their teachers for information when we can, and when all else fails, we turn to the internet. I, myself, have typed into a search bar looking for answers on many occasions. “How can I get my toddler to sleep through the night? How can I get my toddler to eat a vegetable? How is it possible that my toddler just read me a book?” Well, I guess that last one isn’t typical, but it is a question that I have had to Google before. It is a question that quite a few parents have had to Google, actually, and we all have something in common: our kids have Hyperlexia.
I am guessing you have never heard of Hyperlexia. Neither had we, until we stumbled upon blogs by other parents and a few journal articles written by a handful of doctors and researchers who took an interest in it. Hyperlexia is complicated, but a good general way to describe it is a precocious reading ability and an intense fascination with letters and numbers that is accompanied by issues comprehending verbal language. Hyperlexic kids have extremely strong visual and auditory memory which they use to break down TV shows, conversations, music, anything to learn something new. Often, they can recite shows they have seen or books that have been read to them verbatim after being exposed to it once or twice. This act is called “echolalia” and is one theory surrounding the idea of how they teach themselves to read, some as young as two years old. (Bainbridge, “If my Toddler”). Hyperlexia is in the Diagnostic and Statistical Manual of Mental Disorders (also referred to as the DSM), but not as a diagnosis. In this manual, which is basically the Bible of disorders, it is characterized as a splinter skill of children with autism. But, a lot of our kids don’t have autism. My son has had two separate evaluations to prove it.
According to Dr. Darold Treffert, who is a leading expert on Hyperlexia, there are three different types. Type 1: Neurotypical children who read early. Type 2: Children with autism who have Hyperlexia as a splinter skill. Type 3: Children without autism who read early, but have some autistic-like traits that fade over time. (Treffert, “Oops! When autism”). If a disorder is not considered a diagnosable disorder in the DSM, it doesn’t technically exist and doesn’t get diagnosed. Hyperlexic kids often have sensory issues and autistic-like traits that require early intervention, but these services are hard or impossible to get without a diagnosis. Not to mention the fact that it is hard for doctors and educators to help your child with hyperlexic issues when they have no idea what that means. Hyperlexia needs to be added into the DSM as a stand-alone diagnosis so that hyperlexic kids who do not have autism, can get the help they need to foster their strengths and overcome their challenges.
I knew there was something different about my son pretty early on, but I couldn’t put a name to it. He was a terrible sleeper from day one, no sleep training method could compare to his stubbornness to stay awake. He was about two-three months behind in all of his milestones. He didn’t speak until he got into speech therapy a little after he has two, with two exceptions: he would say “mama” occasionally and he could tell you what letter you were holding up for him to see. This was when I first stumbled upon a blog about Hyperlexia. (“AndnextcomesL.com”). He would have meltdowns in public restrooms, when I used the vacuum cleaner or blender, and in crowded places with too much noise. I thought he might have been on the spectrum, as speech delay, sensory sensitivities, and occasional repetitive movement used to soothe oneself (known as stimming) are common signs of autism spectrum disorder. (“Autism Spectrum Disorder”). After bringing these things up to his pediatrician, who didn’t seem to think he had autism, we got a referral for an evaluation to be sure. At the appointment, I asked about Hyperlexia. His doctor had never heard of it. We went to the evaluation and were told that my son did not have autism. He had a few autistic-like traits, they said, but nowhere near enough to give him an autism diagnosis. He made great eye contact, would seek affection, wanted to play with us, responded to his name…but he only wanted to play with his alphabet magnets, all day, every day. I asked about Hyperlexia. They had never heard of it.
Most children with Hyperlexia have sensory processing disorder which can make certain daily things difficult. (“Hyperlexia”). Looking back, had Hyperlexia been a possible diagnosis in the DSM, which would require medical professionals to know the signs and treatment needed, my son would have easily been referred to occupational therapy to help with sensory processing, help with potty training issues caused by his fear of bathrooms, and coping with intense emotional reactions often associated with Hyperlexic kids on a daily basis. (“Hyperlexia Parents Network”). He did not have a diagnosis, so to them, there was no issue. It is not their fault that they didn’t know about Hyperlexia, or why early intervention is important. The information just wasn’t, and still isn’t, readily available to them. The diagnosis does not exist, so it is not something they need to be ready to aid in.
We could have still received a referral to occupational therapy and we did get him into speech therapy even without a diagnosis. However, that doesn’t mean our insurance would have covered it. Aetna, a major insurance company in the United States, states on its website, “Occupational therapy is considered medically necessary only when provided to achieve a specific diagnosis-related goal as documented in the plan of care.” (“Occupational Therapy”). So, if the goal is helping Hyperlexic kids overcome difficulties that occupational therapy specifically helps with, insurance only has to cover it if it is a “diagnosis-related” goal. Without a diagnosis, many parents have to pay out of pocket for services to help their child succeed in daily life. If Hyperlexia was recognized as a stand-alone diagnosis, insurance would be required to cover it as it would any other diagnosis, taking some of the financial burden off of the parents and ensuring care for their kids to help them succeed.
Educators are another big group of important people whom Hyperlexic parents wish knew about the disorder and were also prepared for it. For most, the educational system is a one-size-fits-all type of thing. You have kindergarten, then 1st grade, 2nd, then 3rd and so on. And most children do well with this type of structure. Most children learn physical, emotional, social, and intellectual skills on or near the same timeline. Then, you have the outliers — the kids with disabilities who need some extra help and on the other side of the spectrum, you have gifted children who also need some extra help with accelerated work. Children with Hyperlexia develop asynchronously, meaning that their physical, emotional, and intellectual abilities are uneven. Gifted children without Hyperlexia tend to be as well. Hyperlexic kids crave learning almost from the time they are born. I took a poll in a parent group for kids with Hyperlexia to see what interests they had in common. The majority of the kids knew the alphabet and corresponding sounds, could count up to 100, and knew colors and complex shapes by 2 or 3 years old. Most taught themselves to read between 2–4 years old. About half had taught themselves addition and subtraction before kindergarten. Other common studies were on the solar system, identifying U.S. states and countries on world maps, presidents, and some kids already knew all the elements on the Periodic Table, again, before kindergarten. (“Hyperlexia Parents Network”). These kids are sponges and are very smart. A lot of them also struggle with emotional regulation, social skills, perfectionism, and verbal comprehension. (“Hyperlexia”).
What do you do with a kindergartner who is reading a few grades above level, but can’t answer common questions that begin with who, what, when, where, and why? What do you do with a child who would rather study the world map on the wall, than pay attention to the lesson on basic addition that he taught himself 2 years ago? What do you do with the kids who are gifted, but also have a disability? These kids do not fit into the one-size-fits-all style of education. They need an individualized plan for education to ensure that services are provided for overcoming challenges and that they stay engaged and challenged with accelerated academic work if needed.
An Individualized Educational Program, or IEP, is a legal document created in unison by a child’s parents, teachers, specialized therapists, and sometimes the student to ensure that a child with a disability is given every necessary tool to succeed in their academic career. (“Guide to the IEP”). While parents and involved teachers may choose to work together to create an individualized lesson plan for a child with Hyperlexia, there is nothing stating that they have to provide one. A child must undergo an evaluation by school professionals to determine if they do have a disability. According to ed.gov, the U.S. government’s main website on education, “A group of qualified professionals and the parents look at the child’s evaluation results. Together, they decide if the child is a “child with a disability,” as defined by IDEA.” But what is considered a disability under IDEA? The act includes various things as disabilities ranging from autism to deafness, mental illness to physical impairments. Dyslexia is on the list and considered a disability that calls for an IEP.
A study done by Georgetown University Medical Center, in which the brains of children with Hyperlexia were scanned using fMRI technology, showed that Hyperlexia is the exact opposite of dyslexia. Peter Turkeltaub, a PhD student involved in the Georgetown study said, “A region of the brain implicated in reading skills, the left superior temporal cortex, is like a dial. When the dial is turned up, you find accelerated readers, or hyperlexics. When the dial is turned down, as has been shown for dyslexic children, you find inefficient readers.” (“Eden, “Using fMRI”). While dyslexic children often have trouble reading, they seem to have no issue with comprehension. Hyperlexic children have no problem reading, but often have trouble with comprehension. Dyslexia is on IDEA’s list of disabilities that qualify a child for an IEP if requested. Hyperlexia is not on the list, again, because it isn’t a disability or a disorder recognized in the DSM.
Because Hyperlexia isn’t widely known to doctors and educators, it is up to us as parents to advocate for our kids and spread awareness to help them succeed. We don’t expect people to know everything about Hyperlexia. There is barely any information online about it and among what you can find on it, half is not accurate. I am thankful for the parents who created websites and blogs to help other parents find information when they start searching for “my toddler can read” or “my child is obsessed with the alphabet”. Their information, based on real life experience and research conducted by Dr. Darold Treffert, helped me find an online community of a little over 3,300 parents of children who have Hyperlexia. (“Hyperlexia Parents Network”). My heart exploded when I found hundreds of other little kids who also saw letters and numbers in trees and clouds, read street signs and license plates everywhere they went, had awkward social skills, but an incredible memory and wrote invisible words in the air — a motion that made them look like they were conducting an orchestra. These things are common? These things are normal? For our kids, yes. And it’s great to find people who know and get it. Especially after finding information online that was not just kind of inaccurate, but completely wrong.
A YouTube video posted by a chiropractic office is one of those examples of people not knowing what they are talking about, but claiming to be an expert anyway. Though this is the age of the internet and I don’t understand how defamation of character can still be a thing, I will not name the business or include a link to the video. Though with minimal skill, I am sure you could find it. The man in the video starts out by saying Hyperlexia is a form of autism. Nope. He goes on to tell everyone about a child who was struggling with Hyperlexia without ever explaining what that is, but more so listing some common issues related to autism instead. Yes, there are struggles with Hyperlexia, but most of it is a gift, not this horrendous thing that poor children suffer through and need to be “cured” of as the tone of the video seems to suggest. He then claims that he cured this child who was struggling with Hyperlexia with adjustments to the spine. What? That’s not how this works. That’s not how any of this works. But, who would argue that the information in this video is not factual? The majority of the population doesn’t know what it is. If Hyperlexia was a diagnosis in the DSM, there would be more research conducted and information gathered and shared to educate the general population. So, when a parent goes to Google “my 1 year old just spelled green”, they are directed to a plethora of accurate and updated information, instead of stumbling upon videos of people who claim to cure a neurological disorder with spine adjustments.
The general population would benefit from being educated about Hyperlexia, as well as other things with symptoms that overlap it, such as autism spectrum disorder, sensory processing disorder, and even gifted children. Have you ever been to a store and a child is having an absolute meltdown on the floor? Mom is trying her best to console her kid as her face turns red from judgmental stares and whispers about how she needs to learn how to parent or discipline her child? I was that parent quite a few times, when I forgot to use the bathroom before we left the house to go to the store. I had to take my son into the public restroom with the loudly flushing toilets and hand dryers before my bladder exploded, knowing his sensory issues would not allow this to end well.
He couldn’t recover from that meltdown and I had to walk out of the store without what I needed, carrying my child surfboard style on my hip to get him some quiet, fresh air. His brain processes the sounds at a painful level, but everyone else in the store thought my parenting style made my child poorly behaved. That’s why I never judge another parent whose kid is having a meltdown. Instead, I may offer to help.
My son is now 4, he has grown of out some of the autistic-like traits as Hyperlexia type 3 kids do, and I will often give him a book to read to keep him entertained at the grocery store. There has been a few times that someone has made a comment about him reading so young and asked me how I taught him. When I tell them that I didn’t teach him, most of the time their facial expression switches from pleasantly surprised to a sarcastic “sure you didn’t”. Once, a woman behind us in line gave me a lecture about how I should just let my kid be a kid and not damage him by forcing academics on him too early. I assumed she envisioned my son in his highchair with his hands tied behind his back as I shoved flashcards in his face and yelled at him if he got it wrong. We left and my son asked if we would stop by the library on the way home.
If Hyperlexia was considered a stand-alone diagnosis in the DSM, a lot would change for these kids and their parents. Medical professionals would have more knowledge and be able to identify kids who have it and inform their parents who know something is going on, but have no idea what. It would be easier to get referrals for therapies each individual child needs, as well as give speech and occupational therapists a guide in building a treatment plan in specific Hyperlexic related areas. A diagnosis would give teachers and aids the information and tools needed to help our kids overcome comprehension and social issues. It would also require that IEPs are set in place to make sure the kids stay academically challenged and engaged at school. If it was in the DSM, there would be more awareness and possibly more research into how Hyperlexia happens, how it works, and how to create the best plan for treatment and education. The general public might be slower to judge when they see a child on sensory overload or not feel the need to lecture a parent for “pushing their kid too hard”. There would be more resources for parents who are searching for answers in the beginning and throughout their child’s life, because Hyperlexic kids grow up to be Hyperlexic adults. Their minds are wired differently; their minds can do things ours can’t. They see patterns in everything, they observe the tiniest details, and they can remember almost any information presented to them after seeing or hearing it once. These are the kind of people who can do great things, create great things, and come up with solutions to solve the world’s biggest problems. I can nurture my child’s heart. I can nurture his spirit. I can teach him to be kind, courageous, and honest. I can encourage him in every way I know how to, but I can’t nurture his mind alone. He needs doctors, teachers, family, and friends who understand him, who know how to help and encourage him. Hyperlexia needs to be added to the DSM so that these kids have every opportunity to meet their potential and maybe someday change the world.