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Hyperlexia, 165 cases later: Some preliminary impressions

In 2011, I presented an article in the WMJ describing hyperlexia 1, 2 and 3, and pointing out that the “autistic-like” features in hyperlexia 3 diminish over time as the child “outgrows” the ASD diagnosis that was so often applied in early years. With the help of Bryan Mischler, MSW, we are in the midst of analyzing data from 165 unsolicited e-mails from parents and others where hyperlexia was a prominent feature in the child. I was particularly concerned how often when hyperlexia was present it was automatically assumed that to be associated with an ASD disorder. The number of cases is now well over 200. What follows are some preliminary impressions.

  • 81 cases had a formal ASD, ADHD, PDD-NOS, sensory processing disorder, Apraxia, Adjustment Disorder or Speech Delay. Seventeen were diagnosed with hyperlexia as the primary diagnosis and 77 did not report on diagnosis
  • Sex distribution was 84 percent male and 15 percent female
  • Reported age of onset of hyperlexia was 24.6 months
  • Overall age of first professional contact was a mode of 44 months
  • One cannot make a diagnosis of hyperlexia 3 vs. ASD, or hyperlexia 2 as a part of ASD long distance and without direct examination. But in many of these cases it was the parent’s description of more social proficiency, the tendency to seek and give affection, more eye contact, less withdrawal along with diminishing ‘autistic-like’ behaviors that led them to question the ASD diagnosis or category. Using increased social proficiency as the criteria, the preliminary impression was that 85 cases were possibly hyperlexia 3, 18 were hyperlexia 2 and in 61 cases there was not enough data to make even a preliminary impression.
  • 11 cases that mentioned adult outcome indicated 9 persons were attending college and having successful independent lives. They continued to be exceptional readers which helped their collegiate performance and aided in their careers. Two2 cases were described as needing supervision because of continued autistic characteristics.
  • The parents of each of the cases were encouraged to provide follow-up over time since it is our hypothesis that hyperlexia 2 and hyperlexia 3 will be distinguished from each other by different outcomes and separation of “autistic-like” symptoms from ASD itself.
  • From the tone of the e-mails having an ASD diagnosis applied to their child was a source of great distress for all parents which argues for differential diagnosis rather definitive ASD diagnosis in early childhood, especially when hyperlexia is part of the presenting picture. The positive outcomes described by some parents of hyperlexia 3 children was a relief and hope to many other parents who found that the Hyperlexia 3 profile described in the original article fit their child much better than the typical ASD descriptions.
  • The number of hyperlexia inquiries from parents continue to arrive on a daily basis. Most have a child who has been given an ASD diagnosis but the child’s daily presentation just “doesn’t fit” that category based the parent’s search of the web, or as they read about or meet other autistic children. Then they come across hyperlexia as described on www.savantsyndrome.com and the >WMJ paper. They find in the examples “you just described my child” and as well as the ASD journey they have been on. They then make contact via e-mail. Some parents document positive long-term outcome with their child as an encouragement to other families who have been on that same confusing journey.
  • This work in a preliminary way argues that further developing a three-tiered system for diagnosing children with hyperlexia more accurately categorizes the condition, and provides the best basis for evidence based interventions and critical education decisions.