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Opinion / Viewpoint

When a flair for reading is mistaken for autism

by  /  8 March 2016
©shutterstock.com/Chepko Danil Vitalevich
The Expert:
Expert

Darold Treffert

Psychiatrist, St. Agnes Hospital

The first clue that Garret had autism was his fascination with the Federal Bureau of Investigation anti-piracy warning at the start of movies. This interest showed up when he was 9 months old. There were the baby blocks lined up like a Scrabble board, their letters in alphabetical order, and then delayed speech.

He received his autism diagnosis at age 2, when he could already read the labels of all the over-the-counter medications he passed while being wheeled down the drug store aisles. The doctor who diagnosed him dismissed his early reading ability as a “splinter skill” that didn’t warrant any special attention.

But Garret’s mother was unconvinced that her son had autism. He was not withdrawn. In fact, he was good at making eye contact and loved giving and receiving affection. When he was 3, a speech therapist transformed his knack for reading into a powerful teaching and learning tool. And as Garret grew older, his autism symptoms disappeared.

“He took up music and tae kwon do and excelled at both. His high school years were pleasant,” his mother says. “He had friends, went to the prom, played in two rock bands and, most importantly, was — and is — happy. He received two merit scholarships and just finished his first year in college on the Dean’s list.”

Garret didn’t ‘outgrow’ autism; he never had it. Instead, he has what I call ‘hyperlexia 3’ — a form of superior reading ability accompanied by some autism-like symptoms that generally fade over time. He is part of the approximately 5 percent of people diagnosed with autism as children who no longer meet the criteria for the condition. Many children who read early or speak late fall into that group. The dozens of stories I have heard from parents of these children suggest that hyperlexia 3 is real, is distinct from autism and deserves study as a separate condition.

Musical minds:

I receive many emails from parents that begin, “I’ve got a son or daughter who …” They go on to describe some special musical, artistic or mathematical ability co-existent with an autism diagnosis. In corresponding with these parents, I’ve noticed that children who read early or speak late seem to have a better outcome than those who met typical reading and speaking milestones. These early readers or late talkers tend to shed their autism-like traits so that they eventually no longer meet the criteria for an autism diagnosis.

These parents, like Garret’s mother, questioned their children’s autism diagnoses. Like Garret, their children were not particularly withdrawn or preoccupied. They looked others in the eye and interacted in a giving, friendly fashion — especially with adults.

Yes, they had some ‘autistic-like’ behaviors. They were sensitive to sounds or other sensory stimuli, and might twirl their bodies or repeat words. Some were obsessed with ordering their toys or lining up cars or blocks. However, once their keen ability to read was transformed into a tool for better communication and interaction, their autism-like features faded.

I have accumulated more than 200 reports from parents illustrating this phenomenon. Based on my analysis of these cases, I believe there are three types of hyperlexia. Children with hyperlexia 1 are neurotypical children who simply read early. Those with hyperlexia 2 have an obsession with letters and numbers as a feature of autism. Those with hyperlexia 3 read early and have some autistic-like behaviors, but are relatively outgoing and interactive. They have some language difficulties and are socially awkward with peers, although less so with adults. But over time, these symptoms fade.

Baby Einstein:

I describe and illustrate each of these groups of children in a 2011 article and on my website. In his 2014 MIT Press book, “Late Talking Children: A Symptom or a Stage?” Stephen Camarata describes a hyperlexia-3-like phenomenon in which children who speak late receive an early autism diagnosis but have entirely neurotypical outcomes. Some of these children are exceedingly bright, leading to the diagnosis of ‘Einstein syndrome,’ as described by Thomas Sowell in his 2002 book, “The Einstein Syndrome: Bright Children Who Talk Late.”

The first step toward an effective treatment is to make the correct diagnosis. A child with hyperlexia 3 will not thrive in a special education program for children with autism. And by failing to recognize and take advantage of that child’s superior reading ability, clinicians may miss out on opportunities to help the child capitalize on his or her gifts.

Success stories from parents of children with hyperlexia 3 highlight the need for more research on the condition and how it differs from autism. They also provide a great deal of professional satisfaction. Just last month, I received a letter from a mother who was “moved to tears” when she read my description of hyperlexia 3. She felt it described her son perfectly after a frustrating journey through various diagnoses and recommendations. The paper, she said, provided “happiness and hope.”

I am very much in favor of early intervention for developmental disabilities, including autism. But clinicians must be especially careful when they diagnose autism at an early age, particularly when a child reads early or speaks late. With a cautious approach, doctors can properly pick out the children who meet the criteria for hyperlexia 3. Distinguishing this condition from autism is important. After all, the prognoses of children like Garret, as well as the interventions and educational strategies they need, are not the same as those of children on the spectrum.

Darold Treffert is a psychiatrist in the behavioral health department and research director of the Treffert Center at St. Agnes Hospital in Fond du Lac, Wisconsin. He has been doing research on savant syndrome since 1962.


  • mstmompj

    Speaking from my own experience, and from my observations of others in my family, the kids described as having “hyperlexia 3” are simply those who don’t require supports in the educational setting, because they “can pass” adequately as neurotypical. Time and genetic studies may prove that to be a different type of autism spectrum condition, but it doesn’t make one neurotypical.

    • Anne K. Ross

      I agree. I see children and teens in middle school and high school who are not identifiable as having autism by their appearance or current school behaviors. But when I take a detailed history, they have all the markers of an autism spectrum disorder. (Many would have met criteria for Asperger’s because they did not have language delays.) Autism “symptoms” (I prefer “behaviors”) DO disappear as kids get older since they benefit from natural development, formal intervention, and informal intervention (e.g., parents’ coaching). Also, many kids on the spectrum exhibit good eye contact, social intent, academic achievement, have friends, go to the prom, play in rock bands, don’t appear “withdrawn,” etc. These things don’t necessarily rule out ASD. The DSM-V allows for the diagnosis if the history is present. It’s important because kids with ASD have different brain function and chemistry than kids with ADHD, for example, and can react poorly to stimulant medications if their diagnosis is incorrect. I see more kids with ASD incorrectly ruled out than the other way.

      • Twila Washington

        Yes Anne thank you for responding to my last months email. We have come to the end of making the decision to home school. It breaks my heart that the school refuses to recognize her needs and when they are shown individual evaluations they still refuse to make accommodations. My last resort is mediation with the school and ask that she get sent to a known school that has a contained class with staff that are trained to understand ASD. I know a child that is getting the help she needs in that environment at that particular school. If they refuse, I have not other choice but to pull her from the public school setting and home school through the virtual academy. She loves school and her friends but I can’t sit back and watch her fall through the cracks. I have noticed that there is a little bullying going on as well. She tells me about it but the other positive portion is that she has friends that have her best interest at heart.

        • Anne K. Ross

          I am so sorry to hear this, and I understand your concern for your daughter. I will continue to try to help professionals understand the breadth of the spectrum and the needs of kids who don’t fit the old definition. You might appreciate my recent 2-minute public radio piece about autism awareness:
          http://ww2.kqed.org/perspectives/2016/04/04/autism-spectrum/
          Good luck to you!

  • Twila Washington

    My daughter was diagnosed with autism at 2 years 8 months. She started to read at 2 years old and we thought this was amazing because we had purchased the dvd series of “My baby can read” but when her language started to disappear and she stopped making eye contact we became worried. This is when we sought help. She started to receive speech therapy and ABA therapy. After 2 years of that and early intervention her language started to return. It was her ABA that mentioned she thought our daughter had hyperplexia, Her developmental pediatrician who diagnosed her said that she could very well have hyperplexia but the problem is in the comprehension of the words. If she is not comprehending then there is no meaning. He said she simply has a high level of decoding skills.She is in 1st grade and receives special education minutes but they lack to see her reading comprehension, She does not have one on one support and I am afraid she will slip through the cracks. Dr Treffert said “Prognoses of children like Garret, as well as the interventions and educational strategies they need, are not the same as those of children on the spectrum.” My question is “What are those interventions?” Schools don’t want to give kids with autism or dyslexia or any other disability the interventions they need right now so what kind of intervention could a child with hyperplexia with comprehension need?

    • Anne K. Ross

      This is an important question. Special education law provides services based on children’s present levels of functioning in the areas of academics, language, social functioning, emotional regulation, motor skills, etc. The goals for children determine the services, not the disability category or diagnosis. In your daughter’s case, if her reading comprehension is significantly below grade level, she may be eligible for reading intervention. She should be evaluated by the school “in all areas of suspected disability” and that might include reading, social, etc.

  • Ethyl

    My husband did not talk until he was 4 years old. His kindergarten teacher told his mother he was what is now called intellectually disabled. He took speech classes because he could not pronounce his “r’s”. He works for the federal gov’t as an educational coordinator at the Archives. Too many children are being told there is something wrong with them, and they feel it to the core. Now, our son has Dyslexia…which neither I or my husband ever did and it made school difficult, but he is very bright. I have no doubt both I and my husband would have been labelled autistic as our son was. His Dyslexia was ~never~ addressed, except for extra time on tests.

    I love seeing Thomas Sowell’s book mentioned here, I read an article by him when my son was very young, and later the book. Another person who might be helpful is Dr. Tom West, who wrote the book, In the Mind’s Eye, about visual learners. I’m not saying my child has no problems…every kid is a survivor in one way or another. I’m just afraid too many bright kids get the idea they are defective. So little attention is given to their gifts.

  • Aspie-Autistic 1957

    Autism special interest groups and experts had a fit when a federal task force recently said there was not conclusive evidence to justify universal autism screening for toddlers. I am glad that this task force did this. I think the current rush to younger and younger disgnosis and treatments is harmful. There will be obvoius cases where a kid needs to be screened but toddlers like to do things over and over, they have meltdowns, are afraid to socialize are sensitive to light and sound which are also core autistic traits.

    We have forgotten as a society that kids develop differently. We ignore the fact that brain wiring is growing rapidly at that age and some kids will grow out if it. Today if a marker is missed panic often sets in, a label is given and 25 to 40 hours of expensive behavoiral therapies is given. Typical or autistic making kids do anything for 25 to 40 hours a week is torturing them. Doing that to make them normal is worse.

    Having not been diagnosed until late middle age I do not need to be lectured about how bad it is to grow up undiagnosed. But our parents give us time and space (I walked several blocks by age 6 or 7 and was took public transportation in my tween years, parents get arrested for child abuse if they allow their kids to do that today). As an autistic I especially benifited from this me time, it allowed me to figure out who I am and grow up. Sadly kids are not given this opportunity today.

    Let kids be kids,

    • Ethyl

      I don’t know who you are, but I ~like~ the way you think!

      • Aspie-Autistic 1957

        I certainly do understand what it is like to not know why you are different, to not know why you are bieng bullied, to have adults say bad things, But it was not constant, evenings and weekends were free time, no smartphones for people to track me and plan my day for me 24/7

        • Ethyl

          Would it be any easier today, where you know why you are different, but awful, untrue ideas about people with your label, from experts meant to help, permeate the media? Would it be any easier with the answers we have today: Applied Behavioral Analysis (free will? What free will?), Risperodone, the other vitamin R (Ritalin), all meant lovingly to make things easier for you? How about the drumbeat of fear from organizations? I don’t think I could have survived my son’s childhood. I feel I made a lot of choices, that with my present wisdom, I would do differently. Sadly, it all seems bent on making a child “normal”. You would still have the bullies, now you have experts, drug kings, and blue lights to add to the mix.

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