Expert: James Michael Roan - 4/9/2008

Question
Hi,
First, thank you in advance for taking the time to read these questions. It's hard to even know where to start...

I am the mother of two wonderful girls, ages 4 and 1/2 years and almost 3 (2 years, 11 months). My almost-three year old was diagnosed with HFA six months ago at the age of 29 months. Our concerns regarding her behavior began around 16 months -- very limited eye contact, very limited babbling and no language, frequently acted "deaf" (we even got her hearing checked and it was normal), limited pointing, limited joint attention, sensory sensitivities (especially to noise), and pretty rough tantrums. At sixteen months, we were told by our doctor to get her hearing checked (which took a month) and see how she was doing at 18 months. Hearing was normal and at 18 months, she had made no improvement. At that point, our pediatrician referred us to Early Intervention; however, after five more weeks, we still had not heard from EI (turns out they lost the paperwork) so our daughter was about 20 months old when she began to receive speech and OT services.  I realize this is actually pretty early! She responded farily well to OT and speech and began to gradually acquire some words and we began to learn how to help her manage her sensitivities to noise, crowds, etc. We also began to use some modified ABA techniques at home to help us be consistent in responding to her behaviors. Although, she continued to slowly improve, she still exhbitited language delay, difficulty with social interactions, strange posturing when anxious, a lack of pretend play, etc., and our EI therapists thought she should be seen by a developmental pediatrician. We took her at 29 months, and she was diagnosed with Autistic Spectrum Disorder, Mild and Sensory Processing Disorder.  

However, in the last six months, she has made terrific gains. She is using 4-6 word sentences (although her articulation is very poor and it is difficult for anyone other than me, my husband and her older sister to understand her!), showing more interest and less anxiety around other children, improved eye contact and even some pretend play. She still does a lot of strange posturing (holding elbows out to her side whenever anxious or excited), and has some strange use of language (about 40-50 times a day, she'll walk up and say "I hurt my knee" even though she hasn't hurt her knee). She also has some mild echolalia (she will especially repeat whatever is said to her if she doesnt understand what the phrase means). Also, she is terrified of the potty, won't sit on a baby potty without a diaper much less try out the big one and isn't even close to being potty trained. Screeching is still a problem on some days, although much less frequent. However, her social relationships in our family and with others seem to be improving and she seems to be more "with us" than she did before. Most importantly, she actually seems interested in social interactions more often than not which is a huge change from just six months ago when she regularly ignored the sound of her own name and rarely looked at people.

My four year old, on the other hand, was advanced from the start. She was speaking in sentences by 18 months, had memorized the alphabet by 18 months. At 2 and 1/2 years she would ask me how to spell family member's name, or street signs, etc. I would tell her one time and then she would never forget. On a hike in the woods one day at 2yrs, 8 months old, she proceeded to spell 15 different family and friend's names, and I never coached her in this...I just told her once and she remembered. She loved puzzles from an early age as well, and is very good at games like Memory. She potty-trained at 32 months, pretty much over night, and has never had an accident. Currently, at four years, four months old, she knows all of her letter sounds and reads simple words and texts. She has also memorized nearly every book in the house (she actually memorized the entire Peter Rabbit text, by Beatrix Potter, about 1000 words, after a few readings and "reads it" to her younger sister). I initially thought she was gifted, and still do, but am becoming more concerned that she may have some pervasive developmental disorder issues as well.

For instance, she has difficulty making eye contact when she speaks, and although she is VERY verbal and "talks your ear off", she frequently talks "at people" without giving them any opportunity to respond. When talking, she freqnetly looks out of the corners of her eyes and flicks her fingers in front of her face. However, as we have coached her in her social interactions with her friends in gymnastics, she is able to say, "do you want to play?" and wait for a response before continuing to talk, with inconsistent eye contact. However, in her play with peers, she is very bossy, very oriented toward rules and the order of whose turn it is, and will impulsively push in front of someone if she perceives that someone is "taking" her turn. She also plays with some toys and will "pretend" to an extent (she has little puppy figurines that she plays with as a group of puppies -- not a big, imaginative stretch!) but tends to repeat the same play scenes over and over. She especially loves to play computer games and can navigagte any website (pbskids.org, disney.com, and sproutonline.org); I have to limit her computer time or I think she would stay on it for hours. She does like playing with some toys (puppy figurines, blocks, her collection of safari animals), but she lines them up in straight lines (or with blocks, she sometimes builds high towers) while she plays with them and is very annoyed if her sister touches them or moves them. She has many sensory sensitivities (only eats a few foods because she doesnt like "chewies" as she calls them -- lumps in her food), won't wear jeans because they feel rough, covers her ears when a toilet flushes or siren goes by. Her activity level is very high (even for a four year old I think, although I could be wrong) and she bounces around the house and runs into people and seems physically impulsive. She is EXTREMELY attached to my husband and me and tells us many times a day that she loves us and we tell her the same right back; but two  minutes later, she will shove her sister or refuse to go upstairs for bed and tantrum in her room (crying and yelling "I'm not going to bed!" or "I didn't hurt her!") Her babysitter also reports pretty oppositional and sneaky behavior fairly frequently (approximately five times a day). She spends about twenty-five hours a week with either our babysitter or at preschool. Her preschool teacher reports that she is a "little wild, kind of sneaky sometimes, and has good and not-so-good days with her friends." In other words, she is inconsistent in her behavior, which is what we experience here at home. After a particularly oppositional day or severe tantrun, I will ask her why she thinks she behaved that way, and she says, "I don't' know; my brain just thinks of it and I do it. I know it's a bad choice but my brain makes me do it."

So at this point, I am beginning to be more worried about my four year old and less worried about my almost three year old. While our three year old really seems to be improving (and there is this part of me that still questions that autism diagnosis --I know...denial!), our four year seems to be displaying some concerning behaviors. I would be very grateful for your opinion on (a) do you think I need to have my four year old assessed and why or why not? And if so, assessed for what by whom? and (b) do you regularly hear about children making such vast improvements (as my two year old did) in six months? Is it possible she was misdiagnosed? I know these arent' easy questions, but I am interested in someone's outside opinion at this point. Again, I thank you for your time and expertise.

gratefully,
A worried mom

Answer
Hi Beth;

Sorry for the delay. Recovering from jet lag from Ireland to Seattle.

Children develop unevenly because maturation is uneven at times. You'll see growth spurts accompanied by similar growth in cognitive development. Children with high functioning autism such as PDD-NOS/Asperger's syndrome do grow behaviorally quickly, because they tend to have Average to Above Average intelligence. It is not too likely she was misdiagnosed based on your description but it is possible.

It is possible your four year old has Asperger's syndrome (AS) and may be evidencing hyperlexia, which I encounter with one out of six children with AS. She does show some behaviors associated with AS. In any case, I am sure she is very intelligent. A diagnosis may help her to get some services, if her skills are too high at this age to get EI services.

AS in girls is frequently over looked as they are generally much more social than boys with AS. I'm happy to answer any other or further questions you may have, and as a result, their prognosis tends to be better as well.

Kind regards,
James