Some of these children may never have had autism in the first place, despite being diagnosed with it
- By Darold A. Treffert on December 9, 2015
The headlines read “New study suggests autism can be outgrown”, or “outgrowing autism: a doctor’s surprise and wonder.” The stories are based on studies reporting that 7-9% of children with a documented early autistic syndrome disorder (ASD) have no symptoms of the disorder on follow-up later in childhood or adolescence. That is good news. The question is how to account for it.
Is it possible to simply “outgrow” autism? Was the initial diagnosis wrong? Did some interventions work? Or might there be other explanations for this welcome news?
"In an earlier column titled “Oops. When “autism” isn’t autistic disorder,” I outlined three types of hyperlexia, or precocious reading ability, which is sometimes an element of a diagnosis of ASD. Type 1 are neurotypical children who simply read way ahead of their chronological age. Listening to a 4 year old reading books to his or her nursery school classmates is a startling experience.
Type 2 are children in which intense fascination with letters and numbers, along with early reading and remarkable memory represent ‘splinter skills’ as a part of autistic syndrome disorder (ASD)
Type 3 are children who likewise show intense fascination and preoccupation with numbers and letters very early, along with precocious reading skills and remarkable memory. They do have “autistic-like” symptoms or behaviors but those disappear over time as the child gets older. The outcome in these children is much more positive than those with ASD to their benefit and the great relief of their parents.
Following the “Oops” article I received numerous reports from parents who identified with hyperlexia 3. “You just described my child,” the puzzled, and relieved parents would write as they read the case examples in my Wisconsin Medical Journal article in December, 2011. I reviewed those reports and recently did an analysis of 165 of them with the following findings:
- In all the cases there had been a confusing journey of various diagnoses, sometimes ASD/Aspergers or its variants, or else a wide range of others from hyperactivity to anxiety disorder to speech delay.
- Age of onset of hyperlexia skills was 24.6 months
- Age of first professional contact was 44 months
- Certain features caught the parent’s attention in the hyperlexia 3 group as being different from ‘autism’ as usually described. For example their child demonstrated less withdrawal, more eye contact, the ability to seek and give affection and in general overall increased social proficiency.
- Additionally while some “autistic-like” behaviors were present such as repetitive behaviors, insistence on sameness, occasional stimming, echolalia and increased sensory sensitivity, those symptoms disappeared as the child grew older
- 11 cases that mentioned adult outcomes indicated 9 persons were attending college and having successful, independent lives. They continued to be exceptional readers which helped their collegiate performance and aided their careers. 2 cases were described as needing supervision because of continued autistic characteristics
- Having an ASD diagnosis applied to their child at any point was a source of great distress for all parents.
- It is impossible, of course, to make a diagnosis of the child based only on parent description. But from reading those reports, many of them very detailed, there was a clear impression that in some cases the hyperlexia was indeed a “splinter skill” manifestation of autism spectrum disorder (hyperlexia 2). But in many others, the increased social proficiency particularly, and disappearance of many “autistic-like” symptoms along with more positive outcomes suggested placement in a separate, hyperlexia 3 group.
In all of medicine the first step in treatment is to make the correct diagnosis. The only way to do that is with an in-person comprehensive evaluation by a multi-disciplinary team, including developmental specialists, neuropsychologists, and speech, language and occupational therapists, to name some. That will be the follow-up to this present study.
In the meantime, unfortunately, there continues to be a misconception in the literature and on the internet, that hyperlexia is always part of autism spectrum condition. That same misconception applies to children who speak late (“Einstein syndrome”), as vividly pointed out in Stephen Camarata’s book “Late-Talking Children: A Symptom or a Stage?” His experience with children who speak late mirrors my experience with children who read early.
While early diagnosis and intervention is to be applauded for children with developmental issues of all sorts, caution is warranted when applying an ASD diagnosis to children who read early or speak late, and at least a differential diagnosis by those familiar with hyperlexia or Einstein syndrome should be used until the natural history of the disorder reveals, finally, its true nature.
When a child exhibits hyperlexia 2 or 3, the same intervention tools are used to deal with the autistic, or autistic-like symptoms to the extent they are present. But the distinction between hyperlexia 2 and 3 becomes a critical one when it comes to vital educational decisions and placements. Hyperlexia 3 children do not do well in typical “special education” classes, and require instead different placements. Hence the cautious, informed diagnostic route.
Some will argue that the various interventions and treatments are responsible for that 6-7% of children who “outgrow” their autism. That may be true in some instances, but among my 165 cases are a number of children, now adult, with sufficient outcome and follow-up to conclude that those with what turned out to be hyperlexia 3 did not have ASD in the first place, the initial diagnosis notwithstanding. In these follow-up cases were a number of ‘success stories’ of very positive outcomes from grateful parents. But one was a first person account from a woman, now an adult, who recounted her journey with hyperlexia 3, asking now that she is rid of the symptoms of autism, how does she get rid of the medical history of “autism” that follows her.
My position is that “outgrowing” autism is most often the situation in which a diagnosis of ASD was prematurely and mistakenly applied, especially in children who read early or spoke late. Granted that early distinction can be a very difficult one since separating ‘’autistic-like” symptoms from ASD itself can be difficult in those early years. Hopefully as we study more children with hyperlexia or speaking late, we will become better at that.
In the meantime a cautious differential diagnostic approach, along with careful, watchful observation over time is advised especially when early reading or late speaking are the presenting symptoms.
Those children who are in the hyperlexia 3 group do not “outgrow” their autism. They did not have ASD in the first place. That is a meaningful distinction between the two groups. Fortunately hyperlexia 3 children do very well over the long term and that, of course, is very good news for them, their parents and the rest of us as well.
Meanwhile I will keep collecting reports from parents, which come to me almost daily, for further analysis and study because the success stories are very relevant and encouraging indeed.
References:
Camarata, S. (2015) Late-talking children: A symptom or a stage? MIT Press Cambridge, MA
Fine, D et al (2013) Optimal outcome in individuals with a history of autism Journal of Child Psychology and Psychiatry 54:195-205
Shulman, L Outgrowing autism: A doctor’s surprise and wonder The Doctors Blog, Albert Einstein College of Medicine May 5, 2015
Treffert, D (2011) Hyperlexia 3: Separating ‘autistic-like’ behaviors from Autistic Disorder; assessing children who read early or speak late WMJ 110:281-286