Expert: Dr. Sharon A. Mitchell - 6/26/2010

Question
Dear Ms. Mitchell,

I apologize in advance for the detail of my post, but want you to have a clear understanding of why I am unsure of my daughter's diagnosis.

I have had concerns regarding my daughter's lack of coordination and speech pattern for almost a year and a half.  And I've been nearly certain that she has an ASD since last May.  Unfortunately, during a 20 minute office visit, my daughter often appears 'normal' and my concerns were dismissed by numerous therapists and physicians.

Now that she has just turned 3, her peculiarities are becoming a bit more obvious and she was finally referred to a developmental pediatrician at a leading Pediatric Hospital.

The physician that examined and tested my daughter diagnosed her with PDD-NOS.  I was somewhat taken aback by that diagnosis, because in my experience as a teacher as well as my research into ASD, I felt that she fit the description of Aspergers.

When I questioned the physician about this, she said that she would expect a 3-year old with Aspergers to have a better ability to hold a conversation.  She also said that children with Aspergers do not have a speech delay.

I'm still not at all satisfied with those responses for a number of reasons.  Per what I've read about Aspergers, children should be using single words by age 2 and 2-3 word phrases by age 3.  My daughter far exceeds those parameters.  She has well over 1000 words in her vocabulary, and is able to hold a limited conversation with me (though not often with others in an unfamiliar environment due to overstimulation).  She clearly has communication difficulties:  refers to herself as "Brooklyn" or "you" instead of "I", uses rote phrases, delayed echolalia with the nearly 100 books she has memorized.  However, on the flip-side, she also demonstrates spontaneous speech continuously through the day, and typically uses 5-6 word sentences (occasionally using as many as 10-11 words).

In addition, my daughter, Brooklyn, seems to have hyperlexic tendencies.  Without prompting or being taught, she has memorized all upper-case letters of the alphabet (and has recently become interested in lower-case letters as well), learned the sound(s) of each letter and is starting to decode some words.  I read to her daily, and have since she was a newborn, but beyond that, we haven't done anything to 'push' this interest on her.

As I mentioned earlier, she also has an amazing memory, especially with books.  Of the hundred or so books she has memorized cover to cover, most are several sentences per page (ex - Berenstain Bears series).  In fact, she will frequently correct me if I miss a word or say "replied" instead of "exclaimed" while reading a book to her.

I have not found any research indicating that children with PDD-NOS tend to have these hyperlexic tendencies, though I do believe some are rather skilled at memorization.

In your experience, are there children with PDD-NOS (and Aspergers has been ruled out) that are hyperlexic?  Is it common for physicians to diagnose a young (under 4 or 5 years old) child with PDD-NOS and later determine the child really has Aspergers?  Under what circumstances would you, as a medical professional, diagnose a pre-school aged child with Aspergers?

Thank you in advance for your assistance.

Sincerely,
Jenn

Answer
All the various diagnoses under the umbrella term of autism spectrum disorders can be quite confusing. And, since there is no one definitive medical test for autism, diagnosing is based on experience assessing many children, knowledge of the field, a developmental history and observations from the family.

I applaud you for listening to your instinct that something is different with your child and persisting to find out what may be happening. You're quite right that in a half hour doctor's visit, a child may present in quite a typical fashion.

Kids who receive a diagnosis of PDD-NOS appear to have something in the autism spectrum but don't quite meet all the diagnostic criteria for autism. The differential points between these and Asperger's are that with Asperger's than can be no cognitive nor language delays.

I think I understand what your doctor meant about the conversational skills of three year olds with Asperger's. You mention that your little girl is able to hold a limited conversation with you. Most Asperger's three year olds would have been having lengthy conversations a year ago. Their expressive language often far exceeds the norm for their age, earning the title of "Little Professors". I have a son with Asperger's; here's an example of speech typical of such kids. When he was 13 months old, he and I were the only customers in a store. While one salesman helped me, the other squatted down beside my son who was watching an insect walk along the floor. The salesman pointed and said, "Spider." My son asked, "Is it venomous?"

I know a boy who has a diagnosis of autism; he was nonverbal until he was five but was hyperlexic and reading at age 2. No one taught him to read. He had such difficulty processing oral language that he'd become upset when people talked to him. But if you wrote down what you wanted him to do, this toddler would read it, then comply.

Hyperlexia is not specific only to those with Asperger's.

Does any of this really matter? Do you feel that one particular diagnosis might grant your daughter more services? In some regions, services are not extended to kids with Asperger's.

Are you feeling that a diagnosis of Asperger's implies a higher intelligence than would be common in kids with PDD-NOS or autism? If that's your fear, it is groundless. Autism is a spectrum disorder, meaning that people with this diagnosis might have a severe intellectual disability or an IQ considerably above average. The other spectrum aspect is the degree to which the person is affected by autism.

Are you familiar with Temple Grandin? She's likely the most famous person with autism. Although she did not gain spoken language until school age, and has a diagnosis of autism, she is a professor at the University of Colorado and has a world-wide reputation for both her work in autism and with animal handling. HBO recently released a movie based on Temple's life. Time Magazine has named Temple one of the hundred most influential people (http://www.autism.net/latest-news/autism-in-the-news/1714-temple-grandin-time-ma...). Another such person is Donna Williams (http://www.donnawilliams.net/).

Are you thinking that the long-term outcomes might look rosier for a child with Asperger's rather than autism or PDD? That's not necessarily true. What is true is that children with average to above intelligence and kids with average to above average language skills tend to have an easier time of academic learning. How well they'll function as independent adults has a great deal to do with these two factors and most importantly the compensatory skills they acquire - the ability to problem solve and self-regulate and manage themselves.

Pervasive Developmental Disorders are diagnosed in North America using the criteria found in the DSM-IV. The next version of the DSM will come out in May, 2013. In this next version it is proposed that Asperger's and PDD-NOS be removed. All such diagnoses will be autism. You can read about it here: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94

I cannot give you an opinion as a medical professional because I am not a medical person. Like you, I'm an educator. I have a B.A. in Psychology, a B.Ed., in Exceptional Children, an M.A. in Educational Leadership and am just completing a PhD in Psychology Management.

I'm really not sure that the exact label matters. All these labels fall under the umbrella term autism spectrum disorders. What does matter is that you and her future teachers understand your child's pattern of strengths and weaknesses so that you can help her become as independent, happy and productive as she is able.

Sharon A. Mitchell, B.A. B.Ed., M.A., PhD candidate