Distinguishing autistic-like behaviors from Autistic Disorder
By Darold A. Treffert, MD
Hyperlexia: children who read early—identifying the subtypes
Hyperlexia— precocious reading ability in very young children—can present itself in several ways. In one group some “normal” (neurotypical is the proper term these days) children simply read early; they may be reading at a sixth grade level at age 3 for example with no behavioral or other concerns. Eventually their classmates catch up in reading skills, but such advanced reading at a very early age understandably draws attention. This form of “hyperlexia” is not a disorder; it does not require treatment. These children, usually very bright, go on to have very typical, successful lives. I refer to this group as Hyperlexia I.
A second group of children who read early are some with autistic disorder where the hyperlexia is in fact sometimes viewed as a savant-like “splinter skill” associated with the autism. These children have other signs and symptoms of Autistic Disorder and the early reading is but one facet of that more pervasive disorder. Intervention and treatment in this group is directed at the underlying Autistic Disorder. However the precocious reading ability can itself be a valuable treatment tool for teaching language and social skills and should not be marginalized or disregarded as unimportant or frivolous. I refer to this group as Hyperlexia II. Unfortunately, as I will point out, some clinicians and other specialists hold that when precocious reading ability is present, and when coupled with comprehension, language and social difficulties, it is always part of an autistic spectrum disorder. I do not subscribe to that view.
Instead, there is a third group of children, many of whom have been brought to my attention through “I’ve got a son or daughter who…….” inquiries from the savant syndrome web site at www.savantsyndrome.com. This third group of children who read early present with a startling precocious ability to read, well beyond that expected at the child’s chronological age. The hyperlexia is coupled with an intense fascination with letters or numbers. Yet in spite of the intense preoccupation and ability with words, there are, correspondingly, significant problems in understanding verbal language. Comprehension of that which is masterfully read is often poor, and thinking is concrete and literal. There is difficulty with, and paucity of, abstract thinking. There may be some behaviors and symptoms commonly associated with autism spectrum disorders as well including echolalia (repeating rather than initiating conversation), pronoun reversals, intense need to keep routines (obsession with sameness), auditory or other sensory hypersensitivity, specific intense fears, strong auditory & visual memory, and selective listening with the appearance of suspected deafness. In this group of children these latter “autistic” traits and behaviors are only “autistic-like” however, mirroring those seen in autistic disorder itself. However, in contrast to those in Autistic Disorder, these “autistic-like” symptoms fade over time as the child “outgrows” his or her “autism” as some parents have described that transition. I call this group Hyperlexia III.
The purpose of this posting is to describe these different types of hyperlexia and to point out the necessity for careful differential diagnosis among them because of differing treatment and outcome implications, along with alleviating some of the unnecessary distress and worry in parents when a diagnosis of Autistic Disorder is applied prematurely and in error to some children who read early.
The literature on “hyperlexia” is really quite scant, beginning as recently as 1967, when the term was first used by Silberberg & Silberberg (Exceptional Children 34:41-42). Generally these children have learned to read before age 5 with little or no training, and have this precocious reading ability combined with language difficulties (in spite of accelerated reading ability) and display significant difficulty in social relationships. These children come to speech and language disorder clinics with a variety of diagnoses such as “autism, behavior disorder, language disorder, gifted, precocious reading ability seen often as rote learning, splinter skills or savant idiosyncrasy” according to one such clinic, the Center for Speech and Language Disorders in Elmhurst, Illinois.
Usually parents of hyperlexic children, when they inquire of this website, have had their children go through numerous evaluations, with various confusing and contradictory diagnoses applied ranging from Autistic Disorder to Pervasive Developmental Disorder, Asperger’s Disorder, Attention Deficit Disorder or language disorder, for example. In other instances there is no diagnosis applied except “precociousness.” Controversy exists as to whether hyperlexia is a serious developmental disorder such as autism, or whether it is in fact a speech or language disorder of a distinct and separate type, or, in some cases, it is simply advanced word recognition skills in a normal (neurotypical) child especially when sometimes accompanying “autistic-like” symptoms are present.
The literature to date is not a great deal of help in making the distinction between hyperlexia being an Autistic Spectrum Disorder, or a separate, distinct language disorder. Importantly, though, it appears that in the latter instance the prognosis overall is quite good. According to Phyllis Kupperman and her co-workers at the Center for Speech and Language Disorders clinic in Elmhurst, Illinois, when such children were first seen at the clinic at age 2 or 2½ they had difficulty understanding language. They may use a few words but often they were echolalic. Their behavior in some ways looked “autistic”. However on follow-up these children emerged out of that “autism”, although some did retain some aloofness or antisocial or oppositional behaviors. But over time the aloneness and self-stimulating behaviors decreased dramatically as language comprehension and expressive language improved. By the time many of the hyperlexic children were in the first or second grade many of the ‘”autistic” behaviors had diminished and while remaining aloof, the children did begin to socialize more. In short, they emerged significantly from their “autism” because it was not Autistic Disorder at all.
An article entitled “Reading Skills in Hyperlexia: A Developmental Perspective” by Kate Nation is another source of information on this condition (Psychological Bulletin 125:338-355, 1999). The lengthy article is a comprehensive review of the literature to that date. One section of the article examines the relationship of hyperlexia to developmental disorders such as autism. The author concludes that hyperlexia, while present in some children with Autistic Disorder, is not specific to Autistic Disorder or confined to that condition. Instead, hyperlexia can be seen in non-autistic persons, many of whom, however, do have transient autistic-like symptoms and behaviors.
It has been my experience, based on cases that continue to come to my attention, that hyperlexia needs to be subdivided into three distinct categories: type I, type II and type III. In so doing the often expressed view that “hyperlexia” is, in all cases, a form of “autism” can be properly dispelled and prognoses appropriately applied much to the relief of many concerned and distressed parents.
Hyperlexia, type I
These are very bright, neurotypical children who simply read early to the amazement of their parents, grandparents, teachers, peers and parents of their peers. Usually one or both parents have read often and patiently to their children. Very early the child begins to “read” the book which is actually rather prolific memorization of the book triggered by the words and pictures on the pages themselves. Soon however the child is actually reading the words in the book, rather than just memorizing them, and that reading ability can then be transferred to other books. The child is a precocious reader at that point and is reading at a first or second grade level in pre-school, kindergarten or even before. At some point, of course, most of the other children in the class catch up as they begin to read. This group of hyperlexic children constitute what I call early, or precocious readers. They are bright, neurotypical children who happen to read early. My youngest daughter Jill was such a child.
Case Example 1
JT’s mother read regularly to all her children at nap time and bedtime. At age 3 JT remembers wanting to read the book “Little Black, The Pony” herself and would watch her mother’s lips intently as mother read to the book to her. Then one day it happened; JT read the book to her mother instead of the other way around. Dad was skeptical, and indicated JT had probably just “memorized” the book. Not so. Mother gave JT a newspaper article she had never seen before and JT read it perfectly.
At nursery school, JT read to her classmates to the astonishment of the teachers. With formal testing JT was reading at a 6th grade level at age 3 with full comprehension ability and certainly nothing other than neurotypical functioning. As time went on her classmates eventually caught up with JT’s reading ability. But her advanced reading skills continued to serve her well. She went on to become a successful attorney, and, of course, a mother who now reads regularly to children of her own.
Occasionally I will get inquires regarding what happens to neurotypical hyperlexic children when they grow up. I do have messages from persons in their 50’s or older who wrote to tell me they were in my hyperlexic I category as children and then “grew up” perfectly normally with no lingering residuals of any “autistic-like” traits or behaviors whatsoever. This is how one such individual summarized his lifelong experience after having been hyperlexic as a child.
Case Example 2
LM, now 34, began to read shortly before age 3. She was obsessed with words and letters and was never without a book. She pointed out signs and other lettering everywhere and pointed out spelling errors and typos wherever they occurred. While perhaps not understanding entirely what she was reading, the enjoyment she got from reading was the ‘music of the language’. She would sometimes begin reading in the middle of book; it didn’t really matter. Reading was soothing no matter the story.
LM was good at math and had musical talent as well, including perfect pitch. Psychological testing was carried out to see if LM was a child prodigy; “I was not but at the end of it was proclaimed “normal”. Social awkwardness was a problem as a child and LM had few friends.
LM’s family immigrated to the United States when she was 13. She was enrolled in a private school through a scholarship and without any formal instruction in English became fluent in English within that first year. Following high school LM completed a Master’s degree in Engineering and then obtained a law degree and is now a patent attorney at a large law firm. Her social skills have largely normalized. LM finds her advanced reading skills continue and are incredibly useful in her profession. Her memory for verbatim sketches of text are very useful in legal research. Her colleagues admire her ability to spot typos at a glance and the very rapid reading ability continues to be an asset in her work.
LM indicates, appropriately, that she hesitates to label her early reading ability—her type of “hyperlexia”—a “disorder” at all. She feels, instead, her early reading ability was an asset, not a liability, and certainly not a “disorder”. “I was fortunate to have grown up when that diagnosis did not exist. The only label that my parents even thought of was “gifted”.
Others share that hesitation to label what I call Hyperlexia I as “hyperlexia” at all lest it be considered some sort of abnormal condition or “disorder” in perfectly neurotypical, “normal” children. I share that reservation but in recent years the term “hyperlexia”—early reading ability—has been too often mistakenly identified as being a “splinter skill” in children with autism, which, in most instances, as I point out in this paper, it is not. Therefore I have proposed the Hyperlexia I, II and III categories so that a vital distinction can be made between normal variants and skills in children who happen to read early, and those with true disorders.
In short Hyperlexia I is not a ‘disorder’; it requires no treatment. Rather it is a very interesting phenomenon in otherwise usually very bright, “normal”, young children who startle their parents and others with precocious reading ability. While peers eventually catch up in reading skills, hyperlexia I ability bodes well for future academic success in those children with this special ability.
Hyperlexia, type II
This is a group of children who do have hyperlexia as a “splinter skill” as a part of an autistic spectrum disorder. They read voraciously usually with astonishing memory for what they read, often accompanied by other memorization tasks and abilities, sometimes linked with number or even calendar calculating skills. These “splinter skills” are seen along with, and in the midst of, the characteristic language, social and behavioral symptoms seen in autistic spectrum disorders. They usually carry a diagnosis of autistic disorder, Asperger’s disorder or pervasive developmental disorder (PPD/NOS) for example. These cases include the several sub-types of autistic disorder such as classic early infantile autism, early onset autism or late onset, regressive autism to name several.
In this group it is the hyperlexia that raises the “savant syndrome” questions with some clinicians labeling the hyperlexia a “splinter skill”. Clinical presentation, course of the illness and prognosis are those seen in autistic spectrum disorders. However, as pointed out earlier, the precocious reading ability can be a valuable tool for teaching language and social skills. As such, rather than being marginalized or trivialized as a “splinter skill”, clinicians should embrace the hyperlexia and capitalize on its value as a treatment tool. Such a “splinter skill” can be what I refer to as an “island of intactness” in such a child and it is a process of identifying, engaging and enlarging those “islands of intactness”,in my view, that constitutes effective treatment in autistic spectrum disorders.
Thus, hyperlexia can be a splinter skill in savant syndrome in a child with an underlying Autistic Spectrum Disorder, but it is not necessarily so and the differentiation of Autistic Spectrum Disorder from “autistic-like” behaviors is a critical one in terms of intervention, treatment and outcome.
Hyperlexia, type III
This is a less frequently recognized form of hyperlexia overall. It is not an Autistic Spectrum Disorder even though there are some “autistic-like” traits and behaviors which gradually fade as the child gets older.
These children also read early, often show striking memorization abilities, and sometimes have precocious abilities in other areas as well. They may have “autistic-like” behaviors, but, in my experience, they do not have Autistic Disorder. For example, they may show unusual sensory sensitivity (to sounds or touch or taste). Unlike children with Autistic Disorder, they are often very outgoing and affectionate with family, but reserved and distant with peers and would be playmates. They do tend to make eye contact and can be very interactive with persons close to them. There may be fascination with, or intense insistence on, routine and resistance to change. These children seem quite bright, inquisitive and precocious in some areas overall. Interest in, and mastery of, reading coupled with memory powers memorization is conspicuous and often quite amazing. There may other “autistic-like” symptoms or behaviors as well. But these symptoms and behaviors, prognosis ultimately shows, are indeed “autistic-like” and are not Autistic Disorder as such. Over time the autistic behaviors and symptoms fade and, as it turns out, these children then are quite normal (neurotypical) for their age. These are children who “outgrow” their autism, or, more accurately in my view, did not have Autistic Disorder or any of its variants to begin with. The prognosis for these children excellent and I have followed now a number of such cases via correspondence where the outcome has been just that—excellent.
Case Example 1
A mother wrote: “Reading the summary on your web site is like reading the description of my daughter in every way. She was a late talker, socially-avoidant with those she didn’t know well, and began reading at age 2 ½ or so (it’s hard for me to tell when she started as I assumed she was memorizing books until this point). In your words she was ‘autistic-like’ but the diagnosis never seemed right on a number of measures. She was diagnosed with autism a few months before she turned three but it never quite fit. After 15 months of interventions, she is now a normal (whatever that means) 4½ year old and the consensus is that she was misdiagnosed. That said, she continues to display a number of precocious skills (reading, math, spatial skills, expressive language, etc) and, while not delayed in any measurable sense, she is also an unusual child with respect to social relationships (precocious these days), sensory issues and activity level.” This mother indicated that while she was “relieved that autism is no longer an issue,” she was having difficulty making educational choices for her daughter, including whether to send her to kindergarten early based on her advanced academic functioning (generally at a 2nd grade level) or to hold her back one year because her social and emotional skills (while no longer delayed) were not entirely consonant, as yet, with her academic abilities. She was in the process of exploring various educational settings to see what might work out best. But at least “autism” was, to her great relief, out of the picture.
Case Example 2
After reading the original hyperlexia posting on this website a mother sent me a video of her son, NS, reciting the alphabet at age 23 months. He “sees letters and numbers everywhere and spells out the names of the stores” as he and his Mom visit the mall, for example.
NH was given a “clear” diagnosis of “autism” by a psychologist after referral by a neurologist when the child was 12 months old because he never pointed, clapped or waved. But before he turned 2 NS had about 100 words and by his 2nd birthday he was putting two words together and “was doing great and was gaining more and more skills every month. He was happy and loved to learn.” In spite of the diagnosis of “autism” NS was communicating well at age 2, and while content playing alone he did copy and imitate other children and especially enjoyed older children ages 4-6, for example. He would give his family plentiful hugs and kisses. He knew all of his colors. At that point mother wrote “Many people who meet NS and I tell them he has autism are surprised, I think because for the most part he is engaged and social. He has done well with the ABA. The fascination with the letters, and numbers is strange however.”
About six months later I got a follow-up on NS: “I wanted to thank you for your words of encouragement. You were right. NS is doing very well. He has caught up and is at age level for his language. He continues to be VERY social and affectionate. He still loves letters and numbers. His skills have increased and at age 2½ months he counts and recognizes up to 40 and can tell you what starts with the letter “b,” “a,” “z” and so on. He is mimic reading also. He doesn’t know how to read, but for example will read “b…l…u…e” and then say “Yes, it’s blue,” He is social, however, he doesn’t do much of the whole pretend play. He loves to play with his cousins, run around the house, go to the park and play with other kids. From my account right now, I have a regular 2 year old who had some special extras!!”
Case Example 3
GM was 5 years old when his mother first wrote to me in 2002. “GM was hyperlexic as a child. He showed “autistic-like symptoms early on but as language emerged, they have all but disappeared. He still struggles with vocabulary and usage, but thankfully he is a motivated child who is trying so hard to develop coping mechanisms to manage this unique learning style. As you know, there is much debate about hyperlexia and into which diagnostic category it falls. You have outlined them very well I think. It was a long and difficult road for me as a mother trying to get a handle on things. I wish I had seen the article sooner.” I received an 8 year follow-up from GM’s mother in 2010 in gratitude for that earlier hyperlexia article. GM is now 13½. “and doing exceptionally well.” GM is an A/B student. He is “on the quiet side until he is comfortable.” He has no sensory issues and does fine with friends and when in groups. “Earning a black belt in tae kwon do helped with confidence on many fronts. Skills-wise GM is a musical whiz. He has what you referred to once as super-abilities. He took piano lessons for 5 years and played beautiful music, but the rock star in him loves drums. Once he discovered percussion, you’d think her had been playing them forever. His talent is innate.”
“GM knows he is hyperlexic. Sometimes when there is a big group talking all at once he has difficulty following the chatter. He experiences the same when there is a lot of unfamiliar information to digest in certain subjects like history and science. That said, he copes very well and is exceptionally comfortable asking for help or clarity. He is the sweetest, most thoughtful kid. He has a very kind heart that melts mine. I couldn’t be more pleased with his management of hyperlexia. He undoubtedly falls into the third group you described. Though the early years were very challenging and often lonely, I treasure his leaps and tenacity. He is my hero.”
Case example 4
When AB was 2.3 years old he was diagnosed by a speech therapist as having PDD-NOS in that he was reading sight words but had very little pragmatic language and delayed social skills. His parents took him to two developmental pediatricians both of whom felt that while AB did have many autistic-like flags—poor eye contact, expressive/receptive language delays, lining/stacking behaviors, under sensitivity to pain and early reading, he did not fit the PDD-NOS clinical picture.
His mother recently wrote “that through whatever research I could find, your type III hyperlexia seemed like the best fit description of AB—and gave me some optimism. Now a year later, with the help of speech therapy and a small preschool for kids with special needs, AB is speaking in full sentences, initiating conversations, developing pretend play and is very engaged. His language is still out of sync with his reading ability—he’s not quite there with questions words and I expect that he is still not quite at age level for expressive/receptive language, while he is easily reading at a 1st/2nd grade level. I am sure we will continue to face challenges, but it is truly remarkable how much he has changed now that his language has improved.”
In subsequent correspondence AB’s mother listed some of the other “autistic-like” behaviors AB did show for a period of time: rituals and insistence on sameness, knew letters and numbers to 100 before he said “mama,” more interested in page numbers in a book or the color of the page than the pictures or the story, obsessed with letters and numbers, atypical language development with a large collections of nouns by age 2 but not spontaneously combining words (like centipede or octagon), at age 9 months he would carry his magnetic alphabet letters from one room to another, always in the same (non-alphabetical) order and at age 2 did 24-piece jigsaw puzzles in the same order each time.
AB’s parents just had their first conference after AB had attended his new preschool. Mother reports that “socially AB was described as ‘the ring leader’ and ‘concerned about how all the kids are feeling’ and ‘adaptable’. Ironically his language was rated higher than his gross motor skills (which are perfectly fine—he has never been in O.T.” She went on to say that “I am truly grateful for your interest and insights into hyperlexia. It’s been incredibly helpful for our family.” In her correspondence with me AB’s mother indicated she had learned tremendous amount through this whole process: how to cope with experts insisting your child is classically autistic; how to navigate insurance, and how to deal with parents on the playground staring when your toddler reads all the signs for example. She offers “if I can be of any help to other parents in a similar situation” she would be glad to do so.
Any parents who wish to take her up on this kind offer can send such questions to me at email@example.com and I would be glad to forward them to her for reply. Because often, in my experience, the true ‘experts’ in handling specific problematic behaviors in their children with hyperlexia and autistic-like behaviors are the loving Mom’s and Dad’s themselves.
Other conditions where “autistic-like” traits and behaviors occur
Hyperlexia is not the only circumstance where a distinction between “autism” and “autistic-like” is a critical one; that same differential diagnosis is important in children who are visually impaired. Teachers of visually impaired children, and parents, often refer to what are called “blindisms” in such children. In a 1998 article Ek, Ferrell, Jacobson and Gilberg (Developmental Medicine & Child Neurology 40: 297-301) point out that “blindisms”—stereotypical movements, language problems and certain other behaviors–are common in children with congenital or other types of blindness: “Hobson (1993) described the similarities in development during pre-school age (3-4 years) between blind children and those with autism. In both groups impairments in symbolic play, confusion in the use of language and stereotypies were frequent. Many of the autistic features observed in the young, blind child without cerebral damage disappeared with age; as the child acquired a better understanding of the surrounding world, and with the development of language, a basis for sharing experiences and feelings with other people developed. According to Hobson ‘blindness seem to delay rather than prevent development in these respects” (emphasis mine).
Other researchers have concluded as well that “autism,” “autistic symptoms” and “blindisms” are often confused with each other and may be difficult to separate in blind children. But that distinction in visually impaired children, just as in children with hyperlexia, is critical if parents are to be spared unnecessary distress from a diagnosis improperly applied and, equally important, if the right course of treatment is to be applied to the right patient.
There are other conditions where a particular illness- “like” would be an appropriate qualification and caveat. For example some patients on certain medications may have “Parkinson-like” side effects but do not have Parkinson’s disease. Or certain medication side effects or other brain conditions, some transient, can produce “Alzheimer’s-like” signs and symptoms but not be actual Alzheimer’s Disorder. In such cases exceedingly careful history, observation and examination is critical, and sometime it is necessary to let the ‘natural history of the disorder’ emerge before applying a definitive diagnosis or ‘label’ that can have important, lasting consequences. Treatment can still be applied to target symptoms, but parents or others can, in those cases, be spared the unnecessary worry and fear that can accompany certain diagnoses prematurely applied.
The first step in treatment is to make the proper diagnosis: management follows.
The point of this posting on hyperlexia is not to exhaustively discuss the disorder. Rather it is to point out that when precocious reading ability and extraordinary fascination with words presents itself in a very young child, especially when accompanied by other language or social problems that might suggest an autistic spectrum disorder, a comprehensive assessment by a knowledgeable professional or team familiar with the differential diagnosis of the various forms of hyperlexia is indicated.
The first step in treatment is to make the proper diagnosis; an evaluation by a skilled clinician can accomplish that. What I have tried to point out is that in some cases hyperlexia can be a “splinter skill” in Autistic Disorder and that is the appropriate diagnosis; I simply advise caution in applying that diagnosis in children with hyperlexia as a presenting symptom. That caution stems from the pervasive, mistaken notion that hyperlexia in a very young child is always linked to autism or that hyperlexia is by definition, in all cases, a part of autism spectrum disorders. It is not in all cases. When a diagnosis or label of “autism” is prematurely and erroneously applied to a group of children I identify as Hyperlexia III, it produces much unwarranted stress, burden, and worry on part of the parents along with mistaken predictions regarding prognosis.
The “abundance of caution” and “watchful observation” I recommend in children with Hyperlexia III does not preclude intervention and treatment while the “natural history” of the disorder separates out Hyperlexia III from Autistic Disorder. Speech and Language treatment to deal with the speech and comprehension problems, Occupational Therapy to deal with some of the sensory and social isolation issues, and ABA intervention to deal with some of the ritual issues, for example, can all help with the “autistic-like” symptoms just as they do in those children with actual Autistic Disorder. Several parents who had inquired on this site about their child with accelerated, savant-like precocious reading ability, obtained considerable help, and relief, when, in those particular instances, the diagnostic and treatment approaches consistent with the above were followed. That then was an especially grateful group of parents their when their hyperlexic child, as it turned out, was in group III above with “autistic-like” symptoms rather than Autistic Disorder.
But the “abundance of caution” works in the other direction as well. Just as there is risk in making false positive diagnoses of Autistic Disorder in children with Hyperlexia III, there is also the risk of giving false hope in those instances where the hyperlexia is indeed a part of an Autistic Spectrum Disorder. My answer to both those risks: Careful, comprehensive evaluation by skilled clinicians knowledgeable about both Autistic Disorder and what I have come to call Hyperlexia II and III. From such an informed consultation equally informed intervention strategies will emerge whatever the correct diagnosis.
From my correspondence with parents in both Hyperlexia II and III groups, I found that even those parents in group II whose children did have Autistic Disorder in which hyperlexia was a presenting sign or symptom, were also helped, and relieved, when directed to knowledgeable treatment resources in their community. Hopefully, as the literature continues to evolve on hyperlexia, there will be more clarification regarding the classification of hyperlexia into its component sub-groups, and then even more resources will emerge for comprehensive evaluation and then application of appropriate treatment principles to those children into whichever sub-group they belong.
In the meantime I continue to solicit information from parents about more cases, particularly in group III, above, so I can share those stories that have turned out so well, as reassurance, with other parents who are in the beginnings of a search for the appropriate diagnosis and treatment regimen for their child. Letters that I continue to receive, like the one from a mother today outlining how her now 12-year-old-son “is more-or-less outgrowing the “minor traits” that had led to an earlier diagnosis of Asperger’s Disorder is what prompts me to continue writing about hyperlexia and its sub-groups. The beginning of wisdom is to call things by their right names, and the first step in treatment is to make an accurate diagnosis. It is in that spirit that I make the distinction between the several forms of hyperlexia, and the vital distinction between “autistic-like” symptoms and Autistic Disorder. Hopefully that will be of help to other parents as it has been already to so many.
Addendum: Children who talk late and children who read early
In my research on hyperlexia I came across the work of Thomas Sowell and particularly his book Late-talking Children. In doing so I was struck by the similarity of Mr. Sowell’s experience with late talking children and my experience with children who read early. In a follow-up book four years later titled The Einstein Syndrome: Bright Children Who Talk Late, Sowell made the following observation: “Many parents wrote to me to say that they were astonished to read about things that seemed like an eye-witness description of their own child and their own family. One mother said that she got goose-bumps reading descriptions that fit her child and her family so closely, while other mothers have reported simply weeping as they read for the first time something that so obviously fitted their own puzzling child.”
Many parents, likewise, having read about Hyperlexia III have written me the same thing.
What Sowell found was that many cases of children who had delayed speech were being inappropriately diagnosed as “autistic” sometimes by persons not particularly qualified to do so. But also “Then there are the experts specializing in autism. They are in one sense particularly well qualified for saying whether a given child does or does not fit this category. On the other hand, to some of the experts “autism” is just a label to be used for the sake of expediency in getting government funding of help that the child needs on other grounds. Others are engaged in a campaign to downgrade the shock of the term by applying it widely. Still others may simply have a specialist’s bias, expressed by one of the persons in our group as: ‘To a hammer, everything looks like a nail.”
Yet Sowell is careful to point out that in some cases the diagnosis of ASD was the proper one and delayed speech can be, in certain instances, a part of ASD or from other physical causes. But what he also found, based on correspondence with a significant number of parents, was that in some instances children with delayed speech were being diagnosed as “autistic” when in fact some of them, like children with “hyperlexia” did have transient “autistic-like” symptoms that faded over time indicating a diagnosis of ‘autism’ had been prematurely and mistakenly applied. With that error came the same worry, concern and pessimism that some of the parents of hyperlexic children were experiencing as expressed in correspondence with me.
Sowell’s 1997 book was about 46 cases of children who talked late. Four years later, in 2001, his follow-up book, The Einstein Syndrome: Bright Children Who Talk Late provided follow-up on many in that original group, based on correspondence with the parents of those children. But in the interim he had received a great deal of correspondence from other parents whose children talked late and from all those cases he came to the conclusion that some of those children, but not all, fell into a condition that he named “The Einstein Syndrome”: children who were exceptionally bright but at the same time were exceptionally late in beginning to speak. This subgroup of children who talked late had a distinctive set of characteristics—“speech development lags far behind that of other children their age, while their intellectual development surges ahead of their peers. The most famous such person was Albert Einstein, but that have been many others,” according to Sowell.
I am not going to describe The Einstein Syndrome here in any detail; I leave that to Sowell’s excellent book. But his journey with parents of children who talk late, some of whom do have that syndrome, while others have different causes for their difficulties including autism in some instances, is very similar in many respects to my journey, and enlightenment, from parents whose children read early. And some of Sowells’s “conclusions and questions” at the end of his first book mirror some conclusions of my own with respect to hyperlexia and “hyperlexia” could, as far as I am concerned often be substituted for “children who talk late.”
- “There are many reasons why children talk late and very different reasons why they do….whether a given child is simply delayed in speaking or has serious mental or other disabilities is a crucial question for which good professional evaluation is necessary.”
- “The kinds of children who talk late but then go on to do well in schools and colleges, and to have careers in demanding fields may be more common than I would have suspected a year or two ago,”
- “where late-talking is a transient phenomenon, it is almost as if it never happened, as far as the experiences of people outside the family are concerned. In adulthood, the individual himself is often unaware that he talked late—something which usually had nothing like the ominous meaning and emotional stress for the child that it did for the parent.”
- “The experiences of the parents and children in our group may help fill some of the void, both for parents and for those who might otherwise be quick to label a child, risking needless anguish for the parents and long-run damage to the child, especially if he gets swallowed up by one of the many special programs from which few emerge into a normal school setting. Parents must also be prepared to fight for their children’s interests and not be manipulated or intimidated by the education system’s ‘experts’ and smooth talkers. If you need a real expert, hire your own.”
- “If competent medical authorities discover some recognizable reason for the child’s delay in talking, they are likely also to be the best source of advice on what to do about it.”
- “But what if medical science ends up as baffled as the parents, because specialists can find nothing wrong and the child seems obviously bright? There are no miracle methods for getting the child talking, but patience, love and attention may be the best help for this, as for many other things.”
In short, lessons from Sowell’s experience with children who talk late mirror in many ways my experience with children who read early. Thus hyperlexia, like delayed speech, can be from a variety of causes in several sub-groups. While “autism” can be one of those causes in both delayed speech and hyperlexia, that diagnosis is sometimes applied prematurely or inappropriately in both conditions causing undo pessimism and unnecessary stress on the parents already concerned about particular behaviors. The way to avoid that, when there is concern about a particular bit of behavior, is to have a comprehensive evaluation, physical and psychological, by a skilled clinician familiar with both autism and delayed speech, or hyperlexia, or whatever the presenting behavior of concern. Even then sometimes “watchful expectation” will be recommended the best course as the ‘natural history’ of the behavior emerges without applying an “autism,” or any other diagnosis, when not warranted. As it turns out, even in the absence of a diagnosis of autism, “treatment” during that period of observation is the same—attention to sensory, social and behavioral symptoms of concern by formal speech and language or ABA interventions, for example, along with the “patience, love and attention” from caring and involved parents that both Sowell and I would recommend. In matters such as this, as in many other matters, love is a pretty good therapist too.
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For more information, please contact:
Darold A. Treffert, MD
St. Agnes Hospital, Fond du Lac, Wisconsin
Clinical Professor, Department of Psychiatry
University of Wisconsin Medical School, Madison
Personal website: http://www.daroldtreffert.com